FUNDING FOR PERSONS WITH DISABILITIES
METRO AGENCIES REPRESENTATIVES' COUNCIL
FEDERATION OF ONTARIO FACILITY LIAISON GROUPS
CONTENTS
Tuesday 21 January 1997
Funding for persons with disabilities
Kidney Foundation of Canada
Mrs Janet Bick
Mrs Marg Van Dusen
Christian Horizons
Mr Noel Churchman
Mrs Rene Phelps
Metro Agencies Representatives' Council
Mr Glenn Archinoff
Mr Jim Johnston
Federation of Ontario Facility Liaison Groups
Mr Chris Pavlov
Mr Dennis Paproski
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
Chair / Président: Mr Richard Patten (Ottawa Centre / -Centre L)
Vice-Chair / Vice-Président: Mr John Gerretsen (Kingston and The Islands / Kingston et Les Îles L)
*Mr JackCarroll (Chatham-Kent PC)
*Mr David S. Cooke (Windsor-Riverside ND)
Mr TomFroese (St Catharines-Brock PC)
Mr JohnGerretsen (Kingston and The Islands / Kingston et Les Îles L)
*Mr MichaelGravelle (Port Arthur L)
*Mrs HelenJohns (Huron PC)
Mr W. LeoJordan (Lanark-Renfrew PC)
*Mr GerardKennedy (York South / -Sud L)
Ms FrancesLankin (Beaches-Woodbine ND)
*Mrs JuliaMunro (Durham-York PC)
*Mr RichardPatten (Ottawa Centre / -Centre L)
Mr TrevorPettit (Hamilton Mountain PC)
*Mr Peter L. Preston (Brant-Haldimand PC)
*Mr BruceSmith (Middlesex PC)
*In attendance /présents
Substitutions present /Membres remplaçants présents:
Mr DerwynShea (High Park-Swansea PC) for Mr Jordan
Mr BertJohnson (Perth PC) for Mr Froese
Also taking part /Autres participants et participantes:
Mrs ElinorCaplan (Oriole L)
Clerk / Greffière: Ms Tonia Grannum
Staff / Personnel: Mr Ted Glenn, research officer, Legislative Research Service
The committee met at 1533 in room 151.
FUNDING FOR PERSONS WITH DISABILITIES
Consideration of the designated matter pursuant to standing order 125 relating to the impact of the Conservative government's funding and funding cuts on persons with disabilities and their families.
The Chair (Mr Richard Patten): We'll reconvene the meeting at this stage. I understand Mr Gravelle has a question he wanted to pose. Very brief.
Mr Michael Gravelle (Port Arthur): Thank you very much. I just wanted to address an issue. When we had our first presentation yesterday, I know that Mr Carroll indicated to the first presenter that regardless of the downloading on our municipalities in terms of services, the province will continue to set standards.
I would appreciate some clarification on the mechanism that's being put in place to establish those standards as well to maintain them, if that's something he can endeavour to find out for us, what that is; also whether indeed there is going to be any consultation process put in place to either set those standards or maintain them. That would be very helpful.
Mr Carroll appears to be nodding.
Mr Jack Carroll (Chatham-Kent): Yes. You're talking about not anything specific you're looking at, just standards in general for the whole area?
Mr Gravelle: I think you were saying, regardless of the recent downloading in terms of health and social services, that the province would maintain or set standards, have standards set to ensure that services continue to be provided. I guess what I'm curious about is whether there's any way of guaranteeing that will be maintained and what standards are being set; also if there's going to be consultation as part of that process.
Mr Carroll: Just to correct the terminology, it's not a process of downloading; it's a process of exchange. I'll undertake to do that.
KIDNEY FOUNDATION OF CANADA
The Chair: We call our first witnesses, from the Kidney Foundation of Canada. Welcome. As you're settling in, you have half an hour. Any remaining time following between your presentation time and the half-hour is shared equally between the three parties for comments or questions, that sort of thing. We begin the questioning with the Liberal Party this afternoon because we ended up with the Conservatives yesterday. Please proceed. Could you identify yourselves as well, please.
Mrs Janet Bick: Good afternoon. My name is Janet Bick. I'm the manager of provincial advocacy programs for the Kidney Foundation in Ontario. I'm also a kidney transplant recipient and former dialysis patient. I'll ask my colleague here to identify herself as well, then we'll get on with the presentation.
Mrs Marg Van Dusen: My name is Marg Van Dusen. I sit on the government relations committee of the Kidney Foundation. I am also am a renal social worker. I'm president of the Canadian Association of Renal Social Workers and have had considerable experience in working with dialysis patients and will speak from that experience.
Mrs Bick: The Kidney Foundation has grave concerns about the impact of the policies of the current government on the provision of treatment and support services to kidney patients. We appreciate the opportunity to share these concerns with this committee.
Over 7,500 Ontarians are currently being treated for end-stage renal disease. Approximately 55% are receiving some form of dialysis, while the rest have had a kidney transplant. There is no cure for end-stage renal disease. Left untreated, it will inevitably lead to death within days or weeks. The number of new patients is growing at a rate of 10% to 15% per year, and indications are that these numbers could increase even more.
Individuals diagnosed with end-stage renal disease will require some form of renal replacement therapy, that is, dialysis or transplantation, for the rest of their lives. It is critical to understand that unlike many other conditions, where individuals are treated and then released from the hospital system, having kidney failure means an ongoing attachment to a renal program for patients and families.
Individuals with kidney failure face tremendous physical, psychosocial and financial burdens. Many people with kidney failure face extraordinary costs related to their chronic illness: transportation to treatment, special equipment, medically necessary prescription and over-the-counter drugs which often are not consistently covered by hospitals, private health plans, the ODB or Trillium. Support services available until recently to patients through the hospitals -- for example, drugs, nutritional supplements, meal allowances and accommodation costs for training that is only available at a distance from home -- are being continually eroded.
Living with kidney failure imposes continuing stresses on patients and family members, including coping with treatment restrictions, financial worries, strains on spousal and family relationships, threat of transplant rejection, side-effects of drugs and threat of death.
Our concerns over the impact of funding cuts on people living with kidney disease cover a variety of areas. Transportation to treatment is an ongoing challenge for many dialysis and transplant patients across Ontario, especially those who receive treatment three times per week, every week for the rest of their lives. The government's cuts to transit commission funding have forced municipalities to cut back on specialized transit services for the disabled, frail elderly and chronically ill. Not all dialysis patients need to use these services, but for those who do, it is an essential one.
In Metropolitan Toronto, for example, the underfunding of Wheel-Trans threatens to put many dialysis patients at risk. At the beginning of 1996, 454 patients were using Wheel-Trans for trips to dialysis. As a result of new eligibility criteria put into effect in June, many of these patients were declared ineligible.
Underfunding has led to a process which looks only at very narrow criteria and ignores the inability of individuals to safely navigate the regular TTC system or the need for the ride, which is often related to medical urgency. Underfunding has created a two-tiered system, where those with disabilities must pay a $25 registration fee to use public transit while the able-bodied do not.
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It is only through the untiring efforts of the central Ontario branch of the Kidney Foundation that dialysis patients in Metro have been given a temporary reprieve. Individuals who receive dialysis treatment and who have been denied unrestricted service will be granted restricted services to and from dialysis treatment, but only until June 30. We have no idea what will happen after that.
The Conservatives promised there would be no cuts to funding for the disabled. The provincial government must take responsibility for the impact of their funding cuts to municipal transit commissions. The government's most recent announcements regarding cost-sharing with municipalities is a further abdication of their responsibilities in this regard and can only have a negative impact on transit services for the disabled.
Another important transportation issue for kidney patients is the northern health travel grant. Patients who live in the north and are having a kidney transplant, or those who require treatment for complications of surgery and other types of treatment not available locally, must travel to Toronto.
For example, the northern health travel grant currently pays a maximum of $420 for return travel to Toronto from Thunder Bay. While the actual cost of a regular economy fare has been steadily increasing and currently stands at over $900, the amount of the travel grant has remained the same. The additional cost to the patient is now over $500.
Some patients may have to make several trips per year. It is not always possible to arrange travel that takes advantage of more favourable fares. Many patients are unable to work and their only income is from a disability pension. This extra cost only adds to the already overwhelming burden of kidney failure.
The Kidney Foundation has very limited resources to assist these patients. We receive no government funding and operate all programs and services to northern patients through the generous support of the communities in the region. We urge the government to review its reimbursement policies for the northern health travel grant and update them to reflect current travel costs.
Drugs are another issue for patients. The promise of the Trillium program to ease the financial burden of high drug costs is slow in being fulfilled. The program has the potential to increase access to drug coverage for many individuals. However, there are many issues which must be addressed first in order to make it work well. These include deductibles that are set too high, basing the deductible on the previous year's income, and the need for people to reapply each year.
Patients are reporting to us long waits of up to six months to have an application approved and further waits to receive payments for drug costs already incurred. Patients, renal social workers and Kidney Foundation staff are experiencing considerable frustration in contacting the Trillium program. One patient was told that Trillium staff was too busy working on approvals and therefore did not have time to process the receipts of those already approved.
Cuts to social services at the municipal level are having a negative impact on access to necessary supports and assistance. Items previously covered by local social service agencies, such as blood pressure cuffs, weigh scales and other things that are used as part of the daily treatment regime for patients dialysing at home, are no longer funded.
Assistance with the cost of accommodation and meals for patients who must travel to a regional centre for training, to access surgery, dialysis treatments and other related procedures is extremely limited or not available at all. This is a particular concern for patients living in northern Ontario, where the regional dialysis program may be a considerable distance from home.
Cuts to the GWA benefit and the increased difficulty in transferring people to FBA are creating extreme hardship for some patients. We'll talk to that a little more later.
Another large concern is the inadequate funding of dialysis services. In August 1995 the former Minister of Health, Jim Wilson, announced the allocation of $25 million to expand dialysis services across the province. While this was a welcome announcement, it has not gone a long way towards solving the overcrowding conditions in Ontario.
According to the Ministry of Health's own estimates of 15% growth, that funding was to provide only for one year's growth. That one year has passed, and only a portion of the projected spots are available. In the meantime hospitals with existing dialysis programs are being expected to absorb the growth in demand.
In a report to the Minister of Health last June, the Ontario Hospital Association pointed to a lack of appropriate funding for existing dialysis services, for which hospitals are forecasting growth in 1996-97.
Results of a recent OHA survey of hospitals providing dialysis show an increase in services of 32% since 1993-94. The report warned that in the absence of adequate funding for the service, clinical care, including the treatment of patients with end-stage renal disease, will be adversely affected. A JPPC end-stage rental disease funding working group struck in response to the report was to have developed a new costing and funding methodology by October 31 of last year. It has not yet submitted its final report.
In the meantime, many existing programs continue to struggle to provide adequate dialysis care for all those who require it. Patient care and access to treatment are being adversely affected. In addition, other funding cuts to hospitals are also having their impact. Some programs have introduced more part-time, and sometimes less experienced, workers into dialysis units. A number of the new facilities recently opened have not made any budgetary allocation for social work and dietitians. Some units have cut back on the number of social workers and dietitians available, thus increasing caseloads and limiting patient access to the supports they require. These changes are causing increased stress and anxiety for dialysis patients who form long-term, trusting relationships with their health care team.
I would like to share with you a portion of a letter from a patient in Windsor expressing his concerns about staffing changes in his dialysis unit.
"As a dialysis patient, I must feel safe and unthreatened. I have learned to know and trust the nurses who administer to me in my life support system. New, inexperienced faces, constantly changing, causes an insecure atmosphere and stressful environment...a place I don't want to come to," but he doesn't have much choice. "On top of this, 11 inexperienced individuals are to practise on me while they get their confidence. The thought is terrifying!"
I'll now turn it over to Margaret Van Dusen to give you a little more of a sense of how these cuts are affecting individual patients.
Mrs Van Dusen: The words that Janet has spoken from these patients are something I commonly hear with new patients on dialysis, the fears. Dialysis is truly life support. Without it, patients will die.
My experience in my own life is that I'm fortunate not to have had chronic illness, but I've been face to face. I've been with this program for five years, and prior to that working in the health care system since 1973, so I know many people who have had chronic illness in my life experience. I know that these patients I deal with and their families have firsthand knowledge, and the words they use and the things they say to me are so true.
In this country, we have been fortunate in the past to have had safety networks, but I fear they're fraying and we're losing people through the cracks.
I speak of a case of my colleague. She reports on a 46-year-old man with diabetes, end-stage renal disease, heart disease -- not an unusual situation. Having started dialysis as an employed person on long-term disability hoping to go back to work, his benefits ran out and his employer refused to take him back. He was forced on general welfare assistance, which meant he had an income now of $425 a month, with a rental expense of $525 a month, obviously not a situation which is going to be able to continue.
This man had been in the same apartment for 12 years. He had been stably employed. Of course, he becomes stressed, angry, more ill. He gets an eviction notice. Legal aid and advocacy from the social worker really don't help get him back on track. He ends up having a situation where he has to pay $100 a month out of his $525. He gets further behind. He loses his apartment. He loses his telephone. He has no family help, not enough money. With the wait for housing geared to income or suitable places for a patient like this, it's not possible to find anything.
Home care can't serve a patient without a telephone. There's no leniency from Bell Canada. They run a business; they are a corporate entity. There is no leniency for these patients. It's not surprising that this person became more ill and more despondent and had a heart attack and died. My colleague says this is a victim of the Harris cuts. I believe her.
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Another case is of a 30-year-old man who became acutely ill in December and went on haemodialysis; another diabetic with visual impairments. Though he was in some vocational rehab through CNIB for a computer course, his illness forced him to cancel it. Again on general welfare, no available family, depression, illness, can't find affordable, decent housing on that level of income. Family benefits is a six-month wait, if he's deemed eligible and disabled enough under the new eligibility criteria. Presently the man is living in a hostel for a few weeks, but without suitable housing and a phone, he's not going to have the supports to manage.
A 38-year-old woman on haemodialysis with severe peripheral nephritis can't walk more than a few feet. Patients like this one are constantly at risk of having limbs amputated. She wants to take a few courses but is unable to get out because of the new rules of Wheel-Trans. She can get taxis for medical treatment through FBA, but no more. This bright, motivated, very disabled young woman is a prisoner in her home.
These brief true cases outline problems with income support, housing, transportation -- though not mentioned, the drug costs that Janet spoke about are leading to patients not complying with treatment. We're providing a very expensive treatment that's not going to work without these supports.
I would say that life support without quality and without necessary housing, transportation and income is not really life at all. These cases raise our awareness of chronic illness and how people become marginalized. Formerly high-functioning people no longer function well.
Similar are the patients who need access to long-term care, those in hospitals. Often patients who live alone and don't have family caregivers will at some point require access to retirement homes, nursing homes or homes for the aged. Right now these renal patients are excluded from most facilities, with the exception of a very few homes that will accept a renal patient. The homes are concerned about the care of the dialysis access site, the diet restrictions, the multiple medications patients have to take. Just the arrangements for getting them transported to treatment -- whose responsibility is it? -- the need for more nursing time, and an increased level of expertise and regulations preclude the admission of individuals with catheters. A dialysis catheter is an access catheter.
So these changes in regulations in the homes allowing fewer hours of nursing care and the downloading of funding for long-term care to the municipalities are going to make it even more likely that these facilities are not going to be willing to admit these patients. Few chronic care beds are available to meet the needs of the patients.
I speak to you again of a few cases. These are my own cases. A patient, a 72-year-old diabetic with end-stage renal disease from Millbrook, recently trained on peritoneal dialysis, was admitted to Peterborough hospital with myocardial infarction. The coronary bed wasn't available at Oshawa, the regional dialysis centre. The patient had to do his own exchanges in an intensive care unit at that hospital because staff were not able to do the required four-times-daily treatments. He wasn't able to do it; he was too ill. He managed to get sometimes a few of the treatments in. None the less, he was discharged home. At home the failure worsened, and because he was unwell, he missed doing dialysis for a whole weekend.
With the arrival of his son, who flew in from BC, he was brought to hospital. He had a very complicated medical course: developed peritonitis just after admission, a week later cardiac arrest, was transferred to CCU, had heart block and had to have a pacemaker. He had to wait another four days in the ICU because he kept getting bumped by more urgent cases. At the same time he was in hospital he became infected with a gastrointestinal organism which was floating through the hospital and affected other patients. During the admission he ended up having to be converted to haemodialysis and finally was discharged 17 days later. He's fortunately now doing well on haemodialysis, coming in three times a week, but requires volunteer driving services to get him back and forth. His wife doesn't drive and he's too unwell to drive. If that service breaks down, I'm not sure what we will do.
Mrs H, a 74-year-old woman from Bowmanville, was a transfer from Bowmanville hospital to Sunnybrook for treatment of a flash pulmonary edema and cardiac care. A diabetic with a previous nephrectomy and parathyroidectomy, she was started on haemodialysis and then trained for peritoneal dialysis. She had to have two catheters after having had a tunnel infection in one, and she underwent training. She was referred back to our program after discharge home; she only lasted a week because she couldn't manage her care. The therapy is actually the correct therapy for her, it meets her needs, but because of her intermittent confusion and the unavailability of a family caregiver, it prevents her discharge home. She requires a nursing home or a home for the aged long-term-care facility, but no facilities accept peritoneal dialysis patients. She occupies an acute care bed awaiting chronic placement, which is really inappropriate for her needs.
To date I've got three other patients in acute care beds and I know my colleagues in Toronto have many more, not just peritoneal dialysis patients but haemodialysis patients, where there are no long-term-care beds available or suitable for their needs. In some cases, dialysis patients are being virtually dumped on unprepared families because hospitals are being forced by cutbacks to try to discharge the patients.
The last case is of an 84-year-old farmer from Cannington, also a diabetic for 40 years, with diabetic complications of retinopathy, neuropathy and nephropathy. He was hospitalized in Lindsay with acute heart attack, further extended into heart block, and ended up with life-threatening high potassium and acute kidney failure. He had acute-on-chronic failure, by the way, but this acute failure necessitated his urgent haemodialysis. There was no bed in our coronary care unit at Oshawa and no haemodialysis spots. He was sent to Orillia. Five days later they were able to transfer him back to Oshawa and he ended up with a permanent pacemaker insertion the next day. He requires ongoing haemodialysis and chronic care but needs a bed in chronic care and a haemodialysis spot in the hospital that's closest to his family, which is Credit Valley, but there's no bed available.
These cases are not untypical of cases that I deal with on a daily basis, whether they be cases where I'm trying to get services in the community or cases where people are caught in the hospital system getting inappropriate high-cost hospital care. As we speak, there are announcements being made at our hospital in terms of cutbacks to staffing. Janet spoke about the use of lesser-trained nursing care staff, and this will be the future for us. We will have patients who are going to cost the system a lot more. For dialysis patients, at $50,000 a year for haemo, $25,000 a year approximately for peritoneal, it's very expensive if we are not able to offer them optimal care so that they can manage their illness.
I would be happy to entertain any questions, along with Janet, from any of the members.
The Chair: We have three parties asking questions for two minutes each.
Mr Gerard Kennedy (York South): I wonder if you can help us as to why you think there's such a gap, and a growing gap, between what dialysis patients need and where the government's policy seems to be taking us. Have you been given an explanation? Some of this seems to be in a position of costing the government money. It seems very shortsighted. But what do you hear by way of explanation for the way that dialysis patients are facing their future right now?
Mrs Van Dusen: I hear that the programs we're providing, we're streamlining, we're re-engineering, and that services are there and it's going to be better. The practice in terms of my patients is that it's not getting better, that there are more people falling through the cracks, that services that once were available are not available. I'm not sure, Mr Kennedy, if that correctly answers what you were asking.
Mr Kennedy: I guess I was hoping there was something that maybe you didn't have time to bring out, because obviously there are elements you've raised today that seem fairly clear-cut. I don't know whether there's another side, a technical argument, but it seems we're headed for costs in the future that will be higher than the ones we're facing now.
Mrs Van Dusen: Absolutely.
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Mrs Elinor Caplan (Oriole): You've raised some really important points for us. The cases are poignant and I hope the government will address them.
One of the concerns I have is with the number of your patients who are on general welfare, subject, I assume, to the workfare policies of this government. I don't understand why you're having difficulty in having your patients transferred quickly to family benefits. They would have been subject to the 22% cut in welfare support, and that must be something you're monitoring.
Mrs Van Dusen: These cases that are coming before you are actually from a colleague in Toronto, and I'm having the same problem in the Durham community. Because the workers are not seemingly able to respond as quickly, it is taking three to six months to get patients transferred from general welfare to family benefits, which is the correct service for them and of course would entitle them to more generous benefits and services, transportation assistance being one of those. Many patients will not qualify for any kind of services if they don't meet the criteria for general welfare, but we're talking about medically sick people who do qualify.
Mr David S. Cooke (Windsor-Riverside): I certainly suggest to all of those individuals that they should be contacting their MPP's office, just inundating offices, because it's essential that you get them. We've had this problem before and perhaps it can be dealt with -- at least some assistance -- through constituency offices.
You've given some individual cases which I think are extremely helpful for us in understanding the plight that some of your clients are experiencing, but maybe in a broader way you could give a case profile -- the general age, how many of the clients you advocate for are on social assistance -- so we can get a better idea of how in-depth some of those particular problems are.
Mrs Van Dusen: The brief addresses the aging population, and that's certainly a factor; many of these folks are getting older. Our diabetic population is growing. There is literature indicating that we may be seeing up to 50% of the renal population as diabetic, which with their complex medical diseases and complex needs means they require a lot of services and support. Those are the people who, if they're not over 65, you're going to find needing the income support system. We do have patients who have only renal disease, end-stage renal failure, who are able to work, who are self-supporting and managing.
To give you an example of need, about a third or more of my population in Durham and the surrounding communities, which is about 200, including haemo and peritoneal dialysis, require some form of transportation support, be it transit, volunteer drivers or financial subsidies. To answer more directly, I gather it's about a third or more.
Mrs Helen Johns (Huron): I'd like to thank you for coming today. I just want to add a few comments before my question. I have a number of newspaper articles here that talk about $25 million being found for dialysis. I think it's important to note that this government has put this $25 million into treatment for people who need dialysis and therefore have a kidney failure disease of some sort. As I understand it from the briefing note I got from the Ministry of Health, that would imply that when they all get set up -- and I know it's taking time; we're waiting for hospitals to come up with plans -- 580 new patients would be allowed to have kidney dialysis. That's a 15% increase that my briefing note talks about, so I think that's a pretty substantial investment.
I also know that the district health councils have been asked, as they go through their restructuring, to look at the needs of the community and advise ways for hospitals and services in the community to meet the dialysis needs and the needs of people who have renal disease.
One of the things I was surprised you talked about -- I guess in later times if we need to have a discussion on this we should talk. One of the priorities we've put on hospitals with their funding changes is that they have to protect dialysis, cardiac care and mental health, so it would seem to me that funding cuts to the dialysis departments in hospitals would be against the directions of the Ministry of Health. If you have a hospital that's doing something to take funds out of dialysis, I would like to hear about it.
The question we have is, has there ever been sufficient money in the system to meet the needs of dialysis patients?
Mrs Bick: I would venture to say no. Just to perhaps answer some of your comments, with regard to the $25 million and the 15%, that was supposed to cover new patient growth for one year, from 1995-96. We're now almost into 1997-98. Not all of those spots are available, but those patients have sure materialized.
On the other cut --
Mrs Johns: There certainly hasn't been a cut to dialysis in Ontario. There's been an increase in funding.
Mrs Bick: We haven't said that there has been a cut.
The Chair: Excuse me, one at a time.
Mrs Bick: We haven't said there's been a cut; what we're saying is that it's still not being adequately funded.
Your other point around dialysis as a protected program: The Ministry of Health only specifically funds the treatment. If a hospital chooses to provide support services, like a social worker, dietitian and so on, that comes out of a hospital's global.
The Chair: Mrs Bick and Mrs Van Dusen, thank you very much for taking the time in preparing and presenting to us this afternoon. We appreciate it.
CHRISTIAN HORIZONS
The Chair: We have now Christian Horizons, Mr Churchman. You have half an hour, and following your presentation, as you can see, there will be opportunities for questions. Welcome.
Mr Noel Churchman: It's a pleasure to be able to come and address this group. The first page of our brief is simply a bit of background. I am the executive director of Christian Horizons, which I believe is the largest transfer payment agency in the province serving people who are developmentally disabled. As such, I sit with others on the minister's advisory group, and as I'm there I also represent other faith agencies and cultural agencies around that table. What I'm here to talk about today is primarily rooted upon Christian Horizons and what we are or are not experiencing.
The second page in my handout deals with a bit of an introduction. I don't think my presentation will take more than 10 minutes.
There can be little doubt that over the past 10 to 15 years, under the direction of all three major parties -- and by the way, I wore a tie in which I was trying to get in blue, red and a little bit of orange and black; I was doing the best I could. All the parties have basically been doing the same thing over the years and we have got beyond our means. I recognize that. I believe we need, certainly, to begin with the redeployment of the funds and resources that we have. A lot more can be done with that than has been done, and I'm speaking not as an advocate but as an administrator, looking at what we get, how we are able to use it and how we can look for efficiencies. I'd like to suggest that as being the number one item.
Second, I don't think spending money is always the answer. We have found sometimes in our own services that we have had people overstaffed in group homes, in workshops and so on, and we have found that when we have reduced the staff in some of those situations the individuals have been much happier. They sometimes get very fed up going to a workshop and being programmed all day and then coming home and being programmed all afternoon and evening until they go to sleep. It's sometimes very nice to have fewer staff on and them able to have a bit of space and a bit of time. I think we all enjoy that. Of course, that's for the higher-functioning individuals.
Everyone wants a safety net, everyone wants support when they need it, and that's fair, but sometimes as we have reviewed our own services within our agency -- we serve over 800 people; we have over 120 programs or sites across the province -- in that whole area our experience has been, as we've gone back and sorted through in the last couple of years, that there have been some cost savings we've been able to do, a better deployment of staff and better deployment of some of our resources. We've been forced to do it; we haven't particularly liked it.
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The next page deals with an analysis. Although talking about the cuts that we really don't like a whole lot, sitting around the table with the minister's advisory group it's become quite obvious, and even dealing with our own membership and parents across the province, that parent groups are listening very much to the point of their being empowered a little more in the directing of funds or in the purchasing of services or contracting the services for their sons and daughters and loved ones. It hasn't happened to a large extent. This particular government seems to be moving in that direction; it's not the first to move in that direction. It was done under the previous government and it was done under the Liberals before, each one taking steps to move people from facilities into the community and to gain greater input from parents. That's continuing, and I think the parents appreciate that.
They're all afraid of what it means to the various areas when it comes to funding. I've been with Christian Horizons since 1976 -- Bill Davis was Premier -- and through all the governments in between. I'd have to say that all three governments have added funds to developmental services, or at least protected the funds in developmental services. Unlike some of the other areas that you might be talking about and listening to over a period of time, I don't think that developmental services has any political clout. I don't think they're very good at lobbying anything; nevertheless, I appreciate that kind of emphasis that is in place and the caregiving to protect the needs of those individuals.
In the middle of the analysis, really I think I'm talking as a businessman -- I recognize that -- a businessman with a heart, caring very much for the people we serve.
I think one of the problems we have today is a lack of competition. I think competition is good and I wouldn't want to see anything happen that would break down the competition. By "competition," I simply mean variety there in the place so that parents and families can choose and select and work with one another going through.
There is one area up in the Sault where all the agencies have been amalgamated into one superagency. At one point in time I believe that agency was thinking of going on strike; they were not happy with the kind of funding they were getting. The government had no other options; there was no competition. They couldn't go to another agency and say, "Can you help in this?" or "Would you fund new people coming into the community from facilities for whatever dollars are available?" because there was only one agency to go and deal with. I think it helps to have some variety.
There's a lack of standardization in services. I think the Provincial Auditor might be the person to deal most with that, whether you are getting equal dollars buying equal services and whether the Ministry of Community and Social Services really has a handle on what services it is providing. In the last couple of years there have been great strides taken in developing the tools, if you like. Currently in developmental services there's a level of service tools that has been developed, being standardized now, to be used across the province so that they can assess what services are being received, what the average cost is through all the various agencies and they can come up with a standard that they might expect the costs to fall into.
There's no incentive for cost-sharing with families. I think we need to strengthen that and give it some possibility. Maybe I'll talk about that a little bit later on.
There's a lack of accountability to the people receiving services. We sign off with everybody. We send in reports monthly, weekly and quarterly, or whatever it is, and we dot all the i's and cross all the t's, but the parents don't know what services are going through unless the agency communicates back and forth closely with them. I see that when it comes to individualized approaches to funding and contracting the parents will be much more in the driver's seat and feel that they have some accountability built in. The government then will have literally thousands of people scrutinizing the service that's going on and making informed decisions of where they're going to purchase the services to meet their needs and asking that they get quality for that.
There is no definition of the services that require funding at this point. I know the ministry is seeking to set that at this point in time and come up with a standard of what would be the basic needs for services in the future.
Business practices lack focus. They are undertaking initiatives without due consideration, assessing services beyond mandates. There are inadequate spending controls, and it happens within not only our agency but all of them.
I put in a last one down here: "Possible review of levels of remuneration. Need to define responsibilities and ensure that they are in line with other sectors, not just compared to other government-funded groups. Eighty per cent of our operating costs go to staff salaries. We need to ensure that we are in the business of supporting the disenfranchised person who is developmentally disabled." If it means that we can put some money into the family's hands so that they can get people to come in on relief for the weekend to help them in their home, evenings or things like this, and employ the individual for whatever it is, they'll get far better bang for their buck and they'll be able to keep much more in control and maintain the family unit.
I've already spoken about the amalgamation, so I won't go over that any further. The conclusion on that page is, "Savings are possible and current resources can be better deployed."
I have a strategy. First of all, we need a "process to determine a standard of service required by those seeking funding." I think the government is developing a tool right now with the level of services. Christian Horizons developed a tool on its own a couple of years ago where we went and interviewed all the people we serve, their families and their key people to determine what level of service they needed in support, whether it was one-on-one counsellor care, three-on-one overnight, maybe eight to one, what their food needs were, what their health needs were and so on. I think that is needed as a gatekeeper for people requiring funding in developmental services.
Second, require the consumer to contract for the services directly with approved service providers. No, you can't put the money into a person's hands and just expect them to use it all the way -- they might invest it at the horse races to see if they can double their money or whatever -- but you can put it into their hands or direct the money so that they have to spend it or contract with approved providers. Simple enough. If they aren't getting the service they want at the end of a year after they've contracted, they can turn it to another provider. By controlling the money, they can control the services that their sons and daughters receive. I think it helps.
If brokers or case managers are required because the families maybe have difficulty in doing this -- and some families would have difficulty in doing this -- I strongly suggest, and so would the other people you might hear from who sit around this table, those case managers and brokers have to be accountable to the family, not to a government agency. There's a conflict of interest. How can you possibly represent the needs, the interests, the values of the family if you don't even understand them? If you get a broker for your real estate you want one who represents you, and I think it's important, if there are going to be case workers and brokers, that they be accountable and paid directly from the family.
Third, require agencies to be accredited. I'm suggesting to you that there be an accreditation process. There are tools out there and there are a couple of organizations willing to do that. Get out of the business of going around and approving programs. Approve the accreditation process and then let the accreditation model take its place within the sector as the agencies go through. You'll get a more up-to-date and thorough review of the programs that are going on and make sure that the dollars are well spent.
Finally, provide income tax incentives to the people of Ontario. If they go with agency A, B, C or D, whatever it is, and they come and say, "This level of care is needed," and there are so many dollars available because of what that gatekeeping was in saying, "This level of funding is needed, but maybe that family desires something else," then if they wish to add to that, make it the contracted amount so that it's not just whimsical tax incentives. Make it, "Yes, we agree too that this is a viable service for the individuals and hence maybe there's some way that it can be worked into the Ontario income tax portion so they can get credit for that." The government won't get any more money -- they will get less money -- but at least the dollars will be well-spent and the families will be more involved, which I think is something we want to have happen.
General comments:
(1) Families are interested in contracting directly with service providers.
(2) I think that the above approach as we talked about it, and having the families doing the contracting and the working through and even incentives for income tax, strengthens family and the family unit, and I think we want to do that.
(3) Competition will force efficiencies. Providers who fail to deliver the good service for the available dollars will be forced out of business, and it won't require any political clout or going around and having the nasties, if you like, in it. I think it will work that way.
(4) You've broadened the base of support from the government to the families by providing incentives and involvement of the families.
The Chair: Thank you, Mr Churchman. We'll begin the questioning with Mr Cooke. Five minutes.
Mr Cooke: Thank you for your presentation. I'm not sure that I have ever in the years that I've been around had a presentation from somebody whose name so closely resembles the organization: Christian Horizons, executive director, Noel Churchman. That's great.
Mr Churchman: I made it into Maclean's once.
Mr Cooke: I just have one area I want to explore with you. Over the years I've had the honour to be here, we've spent a lot of time on different select committees, and outside of select committees there have been a lot of very in-depth independent studies done, especially in the United States, looking at the American system, about competition in either the social services or the health services.
While there can be an ideological approach to saying that the more competition the lower the costs or the more efficient the services, all the studies that have been done have shown that what ends up happening is the more competition the more the cost, the reason being that the more beds you have, the more facilities you have in place, they all fill up, and if they all fill up, then government ends up spending more money.
That's why you see hospital beds having to be closed and reorganization of the health care system. That's why government finally got a handle, a number of years ago, on the number of nursing home beds in the province. It used to be, what, 25 years ago, anybody who could meet the requirements to get a licence could open up a nursing home, and all those beds filled up because they were either paid by private insurance companies or they were paid, at that point many years ago before OHIP covered them, by welfare.
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While I know there's a ideological reason why some people think that competition is somehow going to improve services, lower costs, bring in more efficiency, all of the facts and all of the history and all of the studies prove exactly the opposite of that. I would just invite you to look at some of those studies that have taken place over the years and I think you'll find that it won't benefit our kids.
One specific question I have for you is that I'd like to get a better idea of what your costs are. What are your average annual costs per client or child in your facilities?
Mr Churchman: I'm sure you understand the tremendous range. We have individuals who require --
Mr Cooke: But I asked for average.
Mr Churchman: I'm not sure I can give you one. I can tell you what our budget is and I can tell you generally the number of people we serve. Our budget is, in round figures, $30 million operating, and the number of people we serve on a 24-hour basis would be about 850. The number of staff we have is about 1,500. From that you can work out some figures. It doesn't reflect the people we would have in on weekend release.
Mr Cooke: Give me the range before my time runs out. You would have some range of what it costs. What's the upper end of what it costs to serve some of your --
Mr Churchman: The last individuals we took in at the closing of D'Arcy Place I believe came in at an annual cost per person between $70,000 and $75,000 a year.
Mr Cooke: I had some idea because I know a little bit about the facility back in my area, and I guess one of the things I've always heard, and I'm surprised it's not in here, is that a lot of parents who would like to have their family members at home would love to be able to have that level of money supporting them at home.
Mr Churchman: We probably care for or help families caring for their sons and daughters at home or with individuals coming in to give them relief and so on, funded through us, either through the ministry or through our own donation base, numbering over 100.
Mr Cooke: Would you support a change in the system that would say if you believe in more competition, to heck with more facilities? How about supporting that that $70,000 or in some cases -- the ones I have dealt with in my community in your facility it has been over $100,000 -- saying that instead of coming to our facility we would support the family getting that $100,000 or that $110,000 and build in the services at home and that would be a better system?
Mr Churchman: Absolutely. I would be very happy if we had no budget, the money was given to the families and they were able to shop.
Mr Carroll: Thank you, Mr Churchman. I want to compliment you on your tie. You haven't quite come to the level of our esteemed friend, Mr Shea, but it still is a nice tie.
The second compliment is it's nice to hear from somebody in this particular area who understands some of what we're trying to do and who understands that our goal in this is to devote more finite resources to the person we're serving rather than to organizations that were designed initially to take care of those people but some of whom may have lost their way a little bit as we've gone along. I compliment you for understanding where we're coming from. Very difficult decisions, as you've talked about, but ones that have to be made if we're going to get the spending of this province under control.
I want to talk just a bit about special services at home because obviously that's an area where you are heavily involved and it's a program that over the years -- it started about 1982. There was a comment made yesterday that our ministry reduced funding for special services at home by 25% and then, to make us look good, made an announcement in January of this year that they were going to increase funding by $5 million.
I just want to set the record straight that every year since 1982 funding for that program has gone up, and in actual fact the funding in 1992-93 was $26 million; 1993-94 was the same, $26 million; 1994-95 was $29 million; 1995-96 was $36 million; the same number in 1996-97, and with the announcement the minister made, it will go up to $42 million in 1997-98. So we are increasing funding for special services at home to take care of those people who come out of institutions.
Mr Cooke: After there were cuts.
Mr Carroll: I want to get that on the record because there was a misconception about that yesterday.
You believe, I understand, in the concept of individual funding.
Mr Churchman: I do.
Mr Carroll: Did your organization always believe in that?
Mr Churchman: I was part of an accountability project down here in the legislative buildings for about five years preceding this past year or so when it was working towards individual contracts, putting together outcomes and so on. As soon as I began to put my head around what it was they were talking about, I was very much on side with it. I didn't see any downside to it at all. I saw the control going to where I thought it should go.
I think it's very important that there be sort of a gatekeeping to know that appropriate dollars are going out for appropriate services. I don't care then. The competition part of it of filling the beds and so on, that part of how much is available in order to purchase is objectively done by an objective third party. But I'm very much in favour of it.
Mr Carroll: Would you support the theory that, as a first step, we need to find where we are not spending money appropriately in the current system --
Mr Churchman: You're forcing that. It's happening.
Mr Carroll: -- as opposed to putting more money into the system?
Mr Churchman: I think it's fair. I have to do that at home.
Mr Carroll: Thank you very much.
The Chair: Mr Shea I think has a question for you.
Mr Derwyn Shea (High Park-Swansea): I picked up on your observation that simply throwing dollars at an issue is not necessarily helpful. It may in fact be throwing dollars in the wrong direction. As you were speaking, I was mindful of the government's repeal of the Advocacy Act and commission as a case in point, for example, where, if it had continued, at least $18 million a year would have been spent to support a professional caregiving advocate and adviser system. In the deputations that the government heard, many people came forward and said they wanted support for caregiving by families and friends and volunteers and community agencies and so forth, and part of the thrust of your presentation seems to corroborate that; that there is a way to enhance the volunteer sector, to enhance the family sector particularly. You were at great pains about that, and I hope I heard you correctly in that regard because that's where our initiative for vulnerable adults has moved with almost $3 million. So I hope that was in fact what I was hearing.
Mr Churchman: Yes.
Mr Shea: Good. Thank you.
Mr Kennedy: Thank you for your presentation. There are some specific questions that it brings to the surface. One is, you are in the institutional sector, by and large -- is that correct? -- in terms of providing residential services?
Mr Churchman: In the communities. We have what would have been termed group homes in the number of about 70. The rest are apartments, family units, boarding situations and so on.
Mr Kennedy: If I understand the gist of your presentation, you're fairly critical of that sector. You think there's room for group homes and community care to provide some better efficiencies?
Mr Churchman: Yes, absolutely.
Mr Kennedy: Including your own agency.
Mr Churchman: Yes.
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Mr Kennedy: We've heard from families here and outside of these hearings who are trying to sustain children at home, and particularly from what seems to be a demographic bulge of families who are facing their own mortality and their own limitations. They're finding that they're facing those limitations without government help, and in some cases, in some regions certainly, and there is dispute but I think it has become clear overall, a lessening of that support.
Is part of your presentation here today to say that there should be some onus put on organizations like yours -- because you did say your organization and the sector that you represent have been relatively immune from funding cuts -- that cuts should be exacted from your area to help some of these families sustain the services at home? Is that part of your advice today?
Mr Churchman: Basically what I've said is a redeployment of funds. We did a program audit through our entire agency and discovered where we could cut and we were able to make some cuts. You'll notice in my report that in the last 18 months we accepted, with fewer dollars, 55 more individuals from the community. That doesn't mean accepting them into our group homes, but we've now freed up funds so that we are able to support those families and those people in their homes or with whatever level of care that they needed, part-time. So I'm saying yes, we need to be more critical about what we're doing, that there are areas for savings. We've identified them, we've shared them with the ministry, and we've even shared the savings with the ministry.
Mr Kennedy: In terms of the situations you're familiar with, you have about 100 families now that you have outside your care but that you're supporting. Have you found that they've been affected by some of the cuts by government in the last year?
Mr Churchman: What I am aware of in our agency is that more people have been served and no one has been put out the other end.
Mr Kennedy: Are you saying that you're not aware of some of the cuts that have happened in transit and other services affecting the disabled?
Mr Churchman: We have a policy within our own agency that each one of our programs has its own transportation. We build it into our budgets and run it through. We've been able to carpool and run circuits around and carry through in those systems. We even work with Reena and the other ones, for instance, in the Toronto area so that we can coordinate those services and try to make them go further. Again, it's a redeployment.
Mr Gravelle: I have some concerns with what you're saying and I'll tell you why, because it's quite personal. I have a brother who's developmentally challenged who lives in a group home in Thunder Bay.
Mr Churchman: That's the one region we aren't in.
Mr Gravelle: Yes, I understand that. The fact is that our family and my parents are of a certain age. They're both healthy, but it concerns me because we have seen on a personal basis what some of the government cutbacks have meant in terms of the staffing and the services. We're still very, very pleased with how he's looked after but we have great fears about that.
Mr Churchman: We have reduced staffing, I should say that.
Mr Gravelle: The fact is, and I will admit to a personal bias, that the concerns really are based upon the fact that we recognize that with our brother this is an environment where indeed we think that the staffing and the access to getting out and being involved in the community and doing some work as well are threatened by this. I certainly appreciate what you're suggesting, and I think it's a balance, but I don't think it can be forgotten that there just simply are some environments where indeed the person will not be in an situations where they can be back home and are in an environment in which they are prospering, as I believe my brother is.
You more or less seem to be suggesting that we should be redeploying. I think in some cases you may be right, but you may not always be right, and that's what I would want to be very careful about. Even in terms of the staff salaries, it's much like what's happening in terms of child care. It's sort of like you're defining that some people can be paid less to look after our children or to look after our family members, and that concerns me as well. I just wanted to express that.
Mr Churchman: I think that's fair. It isn't always the government's load. Christian Horizons and other agencies that we are uniting with will go into the faith community. We will also draw upon that resource. Sometimes with the volunteer help, the long-term help, the transportation help and so on, it's also a case of mobilizing what is available for us, and we've been working very hard in doing that.
Mr Kennedy: What percentage of private funding do you have in your agency currently from faith communities and the public at large?
Mr Churchman: One million dollars.
Mr Kennedy: So one thirtieth?
Mr Churchman: About that much.
The Chair: Mr Churchman, thank you kindly for coming this afternoon and sharing your thoughts and views with us. We appreciate it very much.
RENE PHELPS
The Chair: We have Mrs Rene Phelps. Welcome and please proceed.
Mrs Rene Phelps: Thank you. I'm here today as a parent of a son with a developmental disability and will share with you what the impact of funding cuts to developmental services has meant to our family.
My oldest son, Jonathan, is 20 years old. I also have a 17-year-old son and a six-year-old daughter. At the age of four, Jonathan was diagnosed with autism and to this day Jonathan is an active, non-verbal young man who requires 24-hour supervision. Jonathan has lived at home with us all of his life, and when I look back, I attribute the support I received from Durham family respite and through special services at home as enabling our family to stay together.
Jonathan has been a valued and participating member of our family. Unfortunately, that is not the case for most families who have a child with autism. It is with sadness that I tell you that out of all the young people with autism I have met, either through school or other programs, Jonathan and one other young lady are the only ones who are still living at home. The tremendous battles families go through to get very minimal funding and supports become too much to bear and families are literally forced to give up and say, "I can't do this any more."
While our family has managed to have the necessary supports all these years, now, thanks to the direction taken by this government, my son and our family are quickly moving to becoming yet another statistic. Since our support through family respite and special services has been cut, I'd like to share with you what a day in our life has looked like over the past six months. Before I do, I want you to know this is very difficult for me, as I value my privacy and do not share this information easily.
Walking into our kitchen, you will see the desk lying on its side. The shelf that once held plates is on the floor. In the family room the television sits on the floor. Every picture and mirror is off the wall. Going upstairs to Jonathan's room, you will notice that there are holes in the wall by his bed where he has banged his head. His bookshelf sits on the floor, the dresser is knocked over and the drawers are falling out. If any of these items is put back into place, it is only a matter of time before Jonathan puts things the same way again, so to save ourselves the ongoing stress, we leave things as they are.
If you come on a Monday or Friday, you will notice that Jonathan is very happy. On these two mornings, he goes to work. My friend runs a laundry service, and thanks to a small amount of funding our local autism chapter was able to receive, Jonathan has learned over the past three years basic skills such as taking towels out of the dryer, folding them, carrying the bags to the van and assisting in the deliveries. He is not the same young man at his place of work. He has never shown any damaging or self-abusive behaviour there. At one o'clock Jonathan comes home and stays there for the rest of the day.
If you come to our house on a Tuesday, Wednesday, or Thursday, you will notice that Jonathan brings me the jeans that he wears to work. Since he is non-verbal, I know he is saying to me, "Mom, am I going to work today?" I have to answer, "No Jonathan, I'm sorry, no work today." This breaks my heart because although I have 20 hours of special services at home funding which I would gladly use for this purpose, I'm not allowed to, given the restrictions on the program. I use my 20 hours of SSAH through the rest of the week, so that Jonathan can participate in some community activities. He is able to go swimming, but because of his anxiety and behaviour, he is very limited as to where he can go right now.
On a weekend, if you come to our house, you will notice that my husband is not around. A month ago he was diagnosed with progressive heart disease and will require a bypass. The level of stress that we are living under could literally kill him, so under doctor's orders he cannot help out the same way as he has done before.
I submitted an individualized funding proposal to the ministry last September and to date have not had so much as the courtesy of a reply. The total request I'm making is $55,000, which would allow Jonathan to have a full-time work program and to live in an apartment with support. We as a family would contribute and continue to be involved. If Jonathan were in a group home, I have been around the system long enough to know that with his presenting behaviours he would require a one-to-one support staff, in addition to current staffing. My guess is this cost would be close to $90,000 per year.
My respite worker found a family that was interested in having Jonathan visit with them on weekends but as of yesterday I was told yesterday that since he knocked over and broke some dishes, including breaking the lady's glasses, he was not able to go back. They just couldn't cope.
Jonathan has been out of school for the past three years and over this period of time we've been able to piece together enough support and funding to manage a support system that worked. In order to do this we had to apply to a number of small pots of money, all of which were designated as "one-time dollars." The endless requirement to bare your soul and prove how desperate you are has a very damaging effect on you. You're constantly being reminded that every dollar must go to those most in need and that other families will do without if you succeed in getting what you need. I find this totally insulting, as we, among thousands of families across the province, have done our share and made our contribution willingly because of the love we have for our children.
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As a result of funding cuts to service providers in our area, and thanks to the decision to support more families for the same amount of funding through SSAH, my total support hours have been cut in half. As I mentioned to you earlier, we now have only 20 hours per week and our respite has been reduced to one weekend per month. This has resulted in Jon's daily routine being disrupted, the community involvement disappearing, and he spends many hours at home doing nothing.
I attribute his behaviour and his anxiety to the change in his routine and the meaninglessness of his life. If it were not for my job allowing me to work from home, I would be unemployed. As it is, my job is in jeopardy due to my own exhaustion and stress level.
For those who know me, I am called a strong and knowledgeable parent. I've sat with many families, advocating on their behalf. My involvement in the community spans almost 20 years, where, based on my own personal situation, I've been a strong voice for families at board tables, school systems and with the ministry. My ability to do any of those things any more is quickly eroding. My husband and I are soon reaching the point where we cannot cope with the growing challenge Jonathan is presenting. We are a family on the edge of crisis, hanging on for dear life.
While I'm not here today representing Family Alliance Ontario, I am a board member, and my story represents the everyday lives of hundreds of other families. So often I hear families say, "It is not our children who are the burden; it is the nightmare of bureaucracy, the hoops, the incredible energy it takes to get even a little bit of crucial support." For many it becomes just too much to bear. When also dealing with the day-to-day demands of special needs, families are literally beaten to the ground before they succumb to the bureaucratic maze and say, "I just can't do this any more."
With the pitting of family against family, as we are told, if you get what you are asking for, some other family will have to do without, knowing full well that we as families are the first to want to come to the aid of another family.
While I have the opportunity, I want to tell you that for years families have been penalized for keeping their children at home. Agencies that provide group homes have any number of funding mechanisms to obtain ramps and other equipment to support the needs of people. Foster families are given weekends, extra support and equipment to meet any of the needs the children they are caring for. Yet we, his natural family, who have chosen and want to support our children have access to minimal supports, and we must beg for those; and now we are asked to do with less when we didn't have enough in the first place.
We have asked the question to this day, "Where is the equity, the fairness, the common sense?" The funding structure and policies both being implemented and proposed by this government leave families like mine with nowhere to turn. The cuts to developmental services will promote tragedy: annual applications to special services at home asking for very minimal support; the endless requirement to portray our situations as the most in need, the most desperate, otherwise we will lose what little we already have; the pitting of family against family and service providers as we vie for the crumbs thrown our way. We are well aware of the desperation of families when put up against the wall. By cutting supports to people and families, this will result in disaster. We have already seen that happen.
We hear much talk about equity. I would like to ask you today, where is the equity now where people are fully funded in institutional settings while the rest of us are basically thrown scraps, unable to plan for our lives, always being told, "Yes, this is your funding for this year but we can't promise anything for next year"? We as families are put in a constant state of anxiety. Why are families who want to have their children with them, plan for them, be involved with them penalized and forced into expensive institutional care simply because the system beats us down? We become so exhausted that we have no choice but to completely give up.
Would any of you accept this kind of life? I doubt it, yet hundreds of families are living this, day in and day out. Those of you here today have the opportunity to make changes. You can create a mechanism that invests in family, a mechanism that gives people the support they need to become contributing members of society, to prevent crisis and to avert a potential tragedy.
As I said to you earlier, I am a very private person and I try my best to deal with my own problems on my own. I have opened up my life to you today and shared very personal information only because it is my strong hope that you here today, on behalf of thousands of families in this province, ask the current government two questions: First, where did the $50.4 million go that has disappeared from the developmental services budget? Most important, please ask on our behalf that basic and acceptable levels of support are made available to our most vulnerable members of society.
I will leave you with this final thought: Had we chosen to institutionalize our son at the time he was diagnosed, the cost to the taxpayer over a 20-year span would have been in excess of $1 million, not to mention the devastating effects of separation for Jonathan and our family. The cost of supporting Jonathan at home for the past 20 years is about $300,000.
You have the opportunity to make a difference and we are counting on you.
Mr Carroll: Thank you, Mrs Phelps. I've had an opportunity to discuss a situation very similar to yours with some people in my riding, two or three different families in my riding. I don't have any magic answers and none of us has any magic answers.
We are faced with the dilemma of being involved in a province that has for several years spent dramatically more money than it can afford to spend and we have to deal with that. Has there ever been enough money in the system to provide adequate services for your son, in your opinion?
Mrs Phelps: Up until the last few years the funding we received through special services at home, the support we received through family respite, was about double what we are getting now. We managed fine with that. With the cutbacks, with what's happening now with the stretching of the dollars to meet more people's needs, I'm at the point where I can't do it any more.
I'm saying I'm willing to make the investment in my family, but I can't do it without a decent, livable amount of support. I believe it's not a case of enough money; I think it's a case of priorities. I think we have to determine what the priorities are and the fact that, when you're looking at the most vulnerable citizens of our society, there's an obligation here. As taxpayers, I don't believe people want to see the citizens who are most vulnerable being put in these situations.
Mr Carroll: I agree with you and we certainly don't want to see that. You talked about what you see as unfair treatment of people who are being maintained at home, as opposed to people who are living in institutions.
Mrs Phelps: I'm calling it inequitable.
Mr Carroll: Yes, and as you know, we are moving in the direction of downsizing and closing some institutional care. That cannot happen overnight. We can't close them all down and find placements in the community for those residents. That is a gradual process. We have made a decision, an announcement in January of this year, that we are going to invest another $15 million in community services, a very small amount of money in the overall picture; $5 million of that will be for extra, special services at home. We've also made a commitment in the next four years to take $60 million that would normally fund institutional care and devote it to community care.
We can't just pull a chain and solve all the problems that exist in this area. We have a waiting list of 1,000 people for special services at home and we are serving 20% more people than we did three years ago; mind you, with more money, but still, the pie is cut up into more pieces.
The only thing I can undertake for you is that you sent a letter in September; I think you should have had some sort of a response to that and in my new job I will see that you get a response. I'm not so sure what that response will be, but I will see that you get a response to that.
I appreciate how difficult it's been for you to come and talk to us. We appreciate your input, and please understand that we empathize with you. We are working and trying to make it better for everybody, but we don't have an answer that we can put in place tomorrow.
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Mr Gravelle: Good afternoon, Mrs Phelps, and thank you very much for coming. Obviously, it is difficult for you and I appreciate it. We actually had a presentation yesterday by someone from Thunder Bay which is very similar in terms of the frustrations.
With all due respect to Mr Carroll, I do think, and I think you stated in your presentation, that we have got the opportunity and the mechanism by which we can make recommendations, based on the presentations we have here, to change things. It's become very clear too that rather than just sort of talking about some of the funding you're putting into it, the special services at home program is one that has absolutely worked.
When you were asked whether anything was enough, you mentioned that when you were receiving the appropriate level of funding for special services at home you could manage. I guess one thing you are saying to us is if indeed that program could meet your needs, as it did, it would be easier for you to cope. Is that not the case?
Mrs Phelps: Absolutely, and I'd like to say at this point that $5 million may seem, in some people's opinion, a fair amount of money, but when you translate that down into 12 area offices, our local area office will receive only $240,000, which is a fraction of what's needed in this province.
Mr Gravelle: I recognize that the same situation exists in Thunder Bay as well, and the need continues to increase. I am sure the government will tell you they've put $5 million more into the program, to special services at home, but I think even the Premier himself had called on the government previously to double the amount of special services at home money needed. If this will solve the problem -- I shouldn't say "solve the problem" -- if this will allow you to manage in a way that enables you to maintain a quality of life, as well as Jonathan's, that's hopefully something we can come to in terms of recommendations.
It's clear that this program truly works and by simply cutting the program, as has been done -- I know that in Thunder Bay, they insisted it wasn't cut. They just say --
Mrs Phelps: Add more families.
Mr Gravelle: Precisely, and that will continue to happen. It's a question of what really the government's commitment is to the program.
Mrs Phelps: The other question is, where did the money go that was already take out of developmental services over the years? To be given back $15 million out of $50 million I think leaves some questions to be asked. Basically, that's what we'd like to have some answers to at some point.
Mr Gravelle: You're quite right.
Mr Kennedy: I just want to reaffirm that we will ask those questions. What you're doing and obviously have done in other capacities as a board member, we will take up that challenge. You're doing a favour for the community as well as for your own family in terms of the work you've done. I don't want you to leave here not believing that message has been received.
We heard information yesterday that $85,000 is a rough average figure for the institutionalization costs, that some of the new money that's been announced comes in at a much lower cost. Some of the regional funds that came out were as low as $35,000. We will not, as an opposition, see this government save money on the backs of that kind of transfer. The institutional dollars need to translate into transitional dollars and into supportive home care dollars.
Mrs Phelps: Those dollars need to be reinvested in families.
Mr Kennedy: Absolutely. The one thing -- I am summarizing and if there's anything else that you can elaborate on -- is the idea that there is a challenge here that has to be met, because the families can only bear this as children grow and needs change and so on. That's a demographic thing; it's not something you can manage or wish away in the absence of a government commitment. We have to meet that challenge somehow.
Mrs Phelps: Absolutely.
Mr Cooke: Thank you for your presentation. When somebody comes before us and tells us their story in that kind of detail, even though it's difficult for you to do, it helps us understand better what needs to change, what's working and what's not working.
I've certainly had lots of cases in my own constituency, in my own region, over the years that are very similar. I must say one of the most frustrating things I've ever experienced was, and I'm not sure whether it's exactly the same now, the six-month reapplication. If there was anything we could recommend out of this committee for the special services at home program -- I'm sure there are some cases where the six-month reapplication is appropriate, but in the cases I've dealt with over the years, all it is is a lot of extra work for the family --
Mrs Phelps: It's a lot of bureaucracy.
Mr Cooke: -- a lot of fear for the family and, you're right, a lot of bureaucracy. There are people in the Ministry of Community and Social Services who are sitting down and reviewing those every six months when there is no change in the family.
Mrs Phelps: Autism doesn't go away.
Mr Cooke: Right. If there were anything we could recommend about trying to streamline that, that would be of some assistance. It wouldn't cost; it would probably save some money within the Ministry of Community and Social Services.
The other thing I wondered, on your specific case -- I've dealt with families that have autistic children as well. Part of my understanding of this is that it's absolutely essential that whatever is provided, programs at home and programs in the community, there's got to be consistency because with change the child will regress.
Mrs Phelps: Absolutely.
Mr Cooke: Is that one of the problems when your son can't go to work? If he could go to work more regularly --
Mrs Phelps: He was in a routine. He knew what to expect every day. He enjoyed it, he was productive, he was doing something useful and he recognized that. When that had to be cut back, he ended up sitting at home. If any one of us were put in that same position, and you add to that the inability to deal with change -- I mean, our house is like a war zone. We've never had that. This is the first time we've ever had to deal with this, and let me tell you it's literally impossible to do over a sustained period of time.
Mr Cooke: The final question I have is partly rhetorical, but I'm sure you will have an opinion on it. When Mr Carroll mentioned a few minutes ago that part of the problem is that there's just too much debt, do you think your family and your neighbours would prefer to have a tax reduction that's going to cost $5 billion a year or have some of that money reinvested in kids?
Mrs Phelps: I believe the community wants reinvestment in families, in children, because they are our future. By investing in families now, we avert the kinds of situations that cost the taxpayers of Ontario a fortune, not only in dollars but in terms of society and in terms of outcomes and the kinds of values we see that we all want for ourselves, our families and our communities.
Mr Cooke: Just think what we could do for kids in this province if we had that $5 billion.
Mrs Phelps: Absolutely.
The Chair: Mrs Phelps, thank you very kindly for your presentation and taking the time to put this down.
METRO AGENCIES REPRESENTATIVES' COUNCIL
The Chair: Next we have the Metro Agencies Representatives' Council. Gentlemen, welcome this afternoon. You have half an hour. Please proceed.
Mr Glenn Archinoff: Good afternoon and thank you for inviting us here today. My name is Glenn Archinoff. I'm the vice-chair of the MARC council of boards, and this is Jim Johnston, who is a member of the council of boards. We want to start by giving you a very brief description of what MARC is, then we'll introduce ourselves a little bit and then we'll talk about the impact of budget cuts.
MARC is an association of 52 transfer payment agencies in the Metro Toronto area which provide services to individuals who are developmentally handicapped. These services include residential care, day programs, vocational training, recreational programs and other services designed to allow these individuals to live meaningful lives in the community.
MARC itself is simply a coming together of the agencies in the DH, or developmentally handicapped sector in Metro, so MARC itself does not provide direct services. Membership in MARC is voluntary, and MARC exists really only to help the individual agencies improve the availability, efficiency and effectiveness of their services, and to advocate on behalf of people with developmental disabilities and their families.
MARC doesn't receive any government funding, and we have just one staff person. Our council of boards consists of board members of MARC agencies who are community volunteers. We also have an administrators council, which consists of executive directors of member agencies.
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MARC agencies serve about 5,000 developmentally handicapped individuals with a wide range of disabilities. Some are mildly handicapped and require little support to live in the community; others are more severely handicapped, with complex physical and mental health needs, and require 24-hours-a-day care.
Neither Jim nor I actually work in the DH sector, nor are we academic experts on the subject. Jim is a manager at IBM and I'm an independent nuclear safety consultant, but we come before you today with what we think is a lot of knowledge of and interest in the DH sector. We both have developmentally handicapped children, but also we've both spent thousands of hours working voluntarily on behalf of people with developmental disabilities. We're just your typical, hardworking Ontarians who happen to have a particular interest in people with developmental disabilities.
We've been asked to comment on the impact of the government's funding cuts on people with disabilities and their families. We're going to focus on the impact of cuts on people with developmental disabilities. Through our presentation today we hope to make three specific points.
The first point is that the DH sector was not in good shape even at the start of this government's mandate. There were many developmentally handicapped people who received no services at all and many who received inadequate service.
The second point is that government cuts have reduced the quality of service to those people who do receive services and have made the situation virtually hopeless for those who desperately need services.
The third point is that there is a determination within the DH sector, by community volunteers like ourselves and many others and by service providers, to make the system work better even with diminishing resources so that the unfairness and injustice are rectified at least to the extent that we can do it.
Our view is that the government, particularly the Ministry of Community and Social Services, has yet to recognize this determination, but it must do so and it must facilitate it. Currently we feel that the government, through the ministry, views the sector as an adversary rather than an ally and a partner.
Mr Jim Johnston: In case you think I'm wearing my best suit just because I'm coming to give this presentation, I should say that I have two developmentally handicapped adult children. My wife has faithfully volunteered with them at Scarborough Grace Hospital every Thursday for the past five years, and the Optimist Club is kindly honouring them for their efforts in that volunteer work. We're extremely proud of both of them, and I actually wore my suit because I have to go there from here.
Mr Cooke: I'm just concerned about the dominance of blue in both.
Mr Johnston: I'm sorry, I'm from IBM.
We believe that "a fair society protects the interests and autonomy of vulnerable people and treats them with dignity. This must be done without unduly burdening service providers and families, or creating a costly, complex bureaucracy." We know that this government believes this, since I'm quoting from the speech from the throne. Let me just say it again. We believe that "a fair society protects the interests and autonomy of vulnerable people and treats them with dignity. This must be done without unduly burdening service providers and families, or creating a costly, complex bureaucracy."
What, then, is the issue? If we really protected the interests of people with developmental handicaps without unduly burdening families, we wouldn't be here, but that's not reality. The issue is that even before government spending cuts, many developmentally handicapped individuals and their families were suffering. The government's own figures show that there are approximately 110,000 people in the province with developmental handicaps and that only 50,000 of these receive any specialized services. The majority of them cannot get the services they need.
Currently in Metro there are 1,400 people waiting for residential support and over 1,100 waiting for day programs, and of these people, about 25% are over the age of 35. We're not protecting their interests and we're not treating them with dignity. You politicians don't hear from them because most are unable to speak on their own behalf; that's why we're here. They are not a special interest group. Most don't vote. They don't curry favour. They don't rub shoulders with the rich and powerful. They and their families are simply trying to get the support they need to make their lives livable in their communities in Ontario.
Why do I say these families suffer? You've heard a bit of this, as I understand, before. Caring for a developmentally handicapped son or daughter is a relentless, difficult and stressful task. For example, I have a 73-year-old friend who has a developmentally handicapped son. For 36 years his son has lived at home. He has no services. In the past few years, since his wife passed away, his son has had increasingly severe mental health problems. He has to clean up when his son defecates and soils articles all around the home. He showers him; he shaves him; he cleans up when he throws food around the house; he tries to ensure that his son eats well; he worries when he wanders and he can't find him. My friend is tired, he's stressed and he's losing hope. He's looking for support and he's frightened about what will happen when he dies and there is no one to help his son. In fact, we're all are frightened about what happens when we die and there's no one there to help our son or daughter.
What are we telling him and others like him who are coming here asking for help? "The waiting lists are too long. The government has other priorities. The budget has to be balanced. Repatriating those from the institutions is taking all our energy and money." This man and his wife, who sacrificed rather than send their child to an institution and, by the way, saving the government, if $95,000 a year for institutional care is correct, about, $3.5 million, deserve more. Have we as a society protected his son's interests and treated him with dignity? Not if we're not willing to help, and mark my words: Our society will be judged on how we treat these vulnerable people.
Did you know that 30% of those with developmental handicaps have mental health needs, that is, are dually diagnosed? Adults living at home with no supports are very susceptible to depression and other mental health problems. I know. My daughter is 27. When she left school she had nothing. She went from a very structured life to an unstructured life. She slowly slipped into depression.
I can't describe to you the difficulties my wife and I had with that kind of depression, the kinds of symptoms -- the violence, the bedwetting. The difficulties were just incredible, yet the mental health services that we went to invariably couldn't help and developmental services didn't have the dollars to help because she was a hard-to-take-care-of person.
She ended up being hospitalized at Whitby. We ended up getting advice from people saying: "Just drop her off at Whitby. It's very difficult to get in there, but if you leave here off there, then they'll probably take her, because what else can they do? They have to take her in." My God, what kind of a system are we in when that happens?
Did you also realize that 25% of these vulnerable individuals are sexually abused? That's a mind-boggling number, one out of four, and that's from many studies. Adequate supports for these adults and families in this situation are absolutely essential, and I know that from experience. My son is 30 years old. He was sexually abused by a neighbour and a friend -- twice. He can't talk about that. He can't sit down and work out his issues like normal folk. He needs help; he needs support. He needed support from society. He needed the kind of specialized support that we know how to give, yet we don't have the dollars to give it to him. I don't want to go into that time in my life, but it was absolutely horrendous, and the difficulty is that we know how to give those supports and we're not.
By no means was the situation okay when the government took office. I know the developmentally handicapped services sector grew significantly in the 1980s and early 1990s, as thousands of individuals were brought back to communities from institutions. New agencies were spawned and existing budgets increased as community agencies started providing services to these individuals, and yes, it sometimes costs even more money for these individuals to live in the community than to live in an institution. For example, Glenn was told by a ministry rep that it would cost more for his daughter, with her high medical needs, to live in the community rather than in the institution she was in, and this prediction was correct. But living in the community is better for most of these individuals, and I don't think anybody should apologize for the fact that sometimes it costs money to provide basic services to allow people to live in the community.
Against this backdrop of a system struggling to cope with increasing demands from both repatriation from institutions and an aging population -- by the way, there are days when I really put myself in this category -- trying to cope with adult developmentally handicapped children living at home, the government cut budgets directly by 5% almost immediately after taking office and these cutbacks hurt those at home the most. They eliminated the chance for them to receive support from community agencies. They heightened the despair of families who are already frightened about what will happen as they get too old to care for their children.
This is not a population that you can count on neighbours or churches to care for. Many of them need specialized services. Only government-supported programs can provide this. Recent announcements of $15 million added to the sector from savings due to institution closures have not brought funding for this sector back to where is was two years ago, and here we're only talking about direct funding cuts.
Cutbacks to other government services, such as health, education and transportation, actually have a greater impact on those with disabilities than on others. For example, removing supports that children with developmental disabilities need, such as behaviour therapists, speech-language pathologists or teachers' aides, makes it less likely that they will have a reasonable quality of life they deserve and makes it likely that in the end they'll actually need more supports in their adult life. It certainly makes it harder for these children to be educated in the public school system.
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Cutting transportation for the handicapped means they can't get to community programs, and you've heard what happens when developmentally handicapped children have to stay at home. These indirect cuts have only exacerbated an already bad situation where the developmentally handicapped were already receiving inadequate support in areas which come under the responsibility of other ministries. Problems in the areas of physical and mental health, education, transportation, housing and recreation, among others, are well known and have only been made worse by the new cuts.
The cuts have also added to the stress that community agencies are already under. Developmentally handicapped individuals are living longer, thank God. More of them in care are suffering from the illnesses of old age, including Alzheimer disease. Budget cuts mean that individuals already in service receive less support and make it impossible for these agencies to reach out to people in the community.
We should not forget that apart from cuts, most budgets have been frozen for several years, and the cumulative effect of inflation, although it's low, is like an additional budget cut. So the recent direct budget cuts, even though they are small in comparison to cuts in other areas, combined with the effects of indirect cuts and the eroding effects of inflation, are like the straw that broke the camel's back. There is less funding to do more work for more individuals with complex needs, and people who currently receive no services or inadequate services are left in the lurch.
Even though there is less money available, we can make improvements. We know from doing a lot of consultation with families that they don't want a lot. They want access to information; they want a single point of contact to help them navigate the system; they want parental relief when they need it; they want some meaningful things to do for their developmentally handicapped child; and they want assurances that their children will be looked after when they no longer can. We need to give families control. We can do this by providing them with the money, directly or indirectly, and by giving them the power to choose their services and the help, if they need it, to choose wisely.
Mr Archinoff: As an organization, MARC recognizes that this government was elected with a certain mandate, and we have been operating under the premise that we would need to work with the Ministry of Community and Social Services to make the system better and correct the unfairness and injustice. We feel, however, that the ministry is so focused on cost cutting that it does not see that there are ways to make improvements, even in the current fiscal climate. I want to give you a couple of examples.
MARC had proposed to develop an information system that would allow families with developmentally handicapped children, and any professionals who provide services to people with developmental disabilities, access to information on how they could obtain services, where they could go to get services and what types of services are available, and the government agreed to fund this proposal over a three-year period.
It's noteworthy that we had proposed that this information system be self-funding after that initial time so it wouldn't require an ongoing commitment of funds from the government. We actually got to the point of buying some computer hardware for the system, when the funding was pulled. The reason given was that the sector was undergoing restructuring, so there wasn't any point in building an information system if the structure of the sector was going to change.
Obviously the system was going to be flexible enough to adapt to any change like that, but the point of the story is that, as Jim has said, we have recently undertaken a massive consultation related to another initiative that I'm going to talk about in a minute, and we keep hearing over and over again directly from families that it would really help them if they could get access to information and that they just can't get it right now. If our proposal had not been cut, the information system would be well on its way to being available. This is just one example where, at least in our view, cost cutting is taking precedence over wise decision-making.
The other initiative I was referring to is a restructuring of the sector in the Metro area to do more for more people and with less money. We, being MARC, made a proposal to the ministry to cofund this project but we were turned down because, we were told, the ministry does not pay for planning. When we launched our initiative, we were aware that the ministry was also planning a restructuring exercise that was supposed to start last fall and be finished this spring, I think sometime around March. As far as we know, that exercise hasn't started yet.
In the meantime, we obtained a grant from the Trillium Foundation and we are about two thirds of the way through our project. What's distressing about this story is that we were told directly by senior ministry staff that MARC agencies couldn't really be trusted to make and implement some of the hard decisions that were necessary. That was based on this person's past experience. What the ministry didn't recognize, however, was that MARC had restructured itself so that our cooperative planning process would improve.
The initiatives I've been talking about are driven by community people, lay people, like Jim and myself and many others, who are volunteer board members of MARC agencies. These are people from all walks of life and from across the political spectrum. They will make the hard recommendations, if necessary, and they're in a position, because they sit on the boards of the agencies, to see that the recommendations are carried out.
The point we'd like to make by telling you these stories is that you can't fix the sector just by cutting budgets or moving money around. You can't fix the problems that way. There are many dedicated volunteers and staff of service providers out there who have tremendous knowledge and are willing to put it to work to improve the system. More important, there are families out there who tell us they have been saying for years what needs to be done to fix the system, but nobody actually does it, and they're getting kind of tired of saying the same things over and over again.
We need to tailor services to the individual. This means changing the way we think about delivering services, and this change in thinking has to start with the ministry. Right now, our perception is that they view themselves as controllers and gatekeepers instead of facilitators. The ministry should be at the bottom of the organization chart of service delivery, providing the foundation for everything above, and leading to the developmentally handicapped individual and their family at the top. Right now, the ministry thinks it's at the top and everyone else reports to it. We must correct this perception and get the ministry truly working with the community to solve these problems.
By the way, we don't think the minister's advisory council is serving this purpose. We sit on it and we know it's not really meaningful consultation. But we have seen a glimmer of hope. Recently, some ministry staff, particularly those who are working closely with the agencies, have shown a change in attitude by truly working with the sector. This is a positive change that must percolate throughout the rest of the ministry.
We want to conclude by saying that the situation is dire, as you've heard from us and I think many others, but it's not hopeless. If some serious changes do not occur, and soon, we will all be reading about more and more tragic situations involving the developmentally handicapped. Our goal should be not only to prevent these, but also to see that all people with developmental handicaps never even get close to such situations.
We feel this is a pressing societal issue. We cannot allow families to break up, as they do now, from lack of support of their handicapped children. We cannot shut our eyes to the suffering of these individuals. We can't wait for family crises before we act, because this only increases the support we must give in the future. Fiscal responsibility and humanity both demand that we all support these individuals now so that they can live with dignity in our communities. They deserve no less.
The Chair: Thank you very much. We have about three and a half minutes per party.
Mr Kennedy: Thank you for your presentation. I'd like to get a little elaboration on what you characterize as the adversarial relationship with the ministry. I'm just wondering how that affects the ministry's decisions in terms of the cuts or the allocations of scarce dollars. Have the MARC agencies found themselves in a disadvantaged position in working with the ministry as a result?
Mr Archinoff: We don't really know very much about how the ministry makes its decisions. We attend these advisory council meetings, and let me just give you an example of the way it works. If, for example, you were on the advisory council and were attending these meetings, each of these handouts we gave you today would be numbered and we would collect them all at the end so you couldn't take copies with you. Would you feel you had been treated as a partner in the process? I don't think so. We also are provided with briefing notes after the sessions. The sessions last a day and we get maybe a page or two of very terse notes that are in fact inaccurate.
We go to these meetings, then a couple of months go by and we go to another meeting. Nothing much seems to have changed. As I said, we don't really understand the process.
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Mr Kennedy: In terms of some of the specifics of the risks you've identified, do you have an idea of how many, for example, age-risk families are out there, where the care provider in the household is finding it extremely difficult and is on part of these waiting lists you've described to us?
Mr Archinoff: A subcommittee of MARC has just been looking into this, and they've identified 200 families, I believe, in that category who are clearly at risk right now in Metro.
Mr Kennedy: Quantification is not the only goal or even the primary goal, but we're trying to get a sense that when there are shifts and delays and inadequate responses, there are consequences. You mentioned breakdowns of families who had to make the choice or felt compelled not to sustain the environment they've been able to provide. Any idea of numbers, incidents that have happened, particularly in the past year?
Mr Johnston: I don't have numbers, but when you deal with parents you see a lot of single moms where the father has left because the father can't take the strain and the mother is now trying to deal with the developmentally handicapped son or daughter by themselves. It's more anecdotal and it's more from personal experience, seeing families broken down, but I don't have any numbers for you.
Mr Kennedy: You touched on a number of things, but is there a primary recommendation you have in terms of how to change the conditions you've described that have prevailed over the past year? Would it be the ministry change you mentioned at the end, or is it the dollars themselves that have to be the primary focus?
Mr Johnston: I really think there are two main things. One is that we have to give families some control over their lives. As you've heard before, if you cut their special services at home or if you cut their ability to take care of their child or cut their ability to get their children into some sort of care, they're going to crumble. We have to focus on the family and say, "What does the family need?"
The other part, which is more the MARC part that we're talking about, is that in our mind the government has to look at the agencies and work closely with them. We're coming up with ideas; we're thinking of ways we can do things better in Metro, the collection of 52 agencies we represent. We have to have some meaningful discussion about how that would work and have the ministry really listen to the ideas and recommendations we come up with, as opposed to simply following its own agenda.
Mr Cooke: Thank you for the presentation. There are so many things we could talk about. I must say, in my own constituency it's been a growing caseload over the years of aging parents and the crises they begin to face because of difficulties their young adult is having or because of their own health, and the placements that need to be found. I think you're absolutely right that the concentration over the last considerable period of time and new resources that have been put in place have been for deinstitutionalization. It's been an easy thing to try to forget about those who are already in the community and will require increasing services because parents who have taken care of them are growing old and are just not able to continue to do it. Some of the parents who have come in to see me -- it's just been heartbreaking to see the fear. That reinforces the additional strain that was put in place by the 5% cut.
We can talk in our recommendations about dollars and demographics and what needs to be done, and I hope we will do that in our report to the government, but I think there's a need to talk about other things as well. When I was over in the Ministry of Education, I think we were moving in a fairly dramatic way to integration in our public school system, and that has taken a step backwards in the last couple of years because of supports and also because of some court cases that the ministry changed its position on.
You made one other point that I want to reinforce. It would be almost comical if it weren't so serious, but if you come from a community outside Metro -- many years ago we went to regional offices for the Ministry of Community and Social Services, and a lot of us thought, "Now we're going to understand the decision-making process and now we're going to have people to work with in partnership," but the difficulty I've found for the last 15 years or so is that you call the local office and they say, "We've sent the decision to be made to the regional office," which for us is in London. Then you call the regional office and they say, "We faxed it to Toronto."
The biggest growth industry in the last 20 years for children's services has been on the decentralization of the ministry, and it's more confusing to me now than it was before. At least before I knew I had to call Toronto, call the head office. Now you have to call about six offices before you can find out who's making the decision and who's working on the file.
Mr Johnston: As Glenn said, parents keep telling us that they want that kind of information about where to go and how to get help. Looking at the system from our point of view, it's very confusing, and when you have huge ministries like Health and Comsoc providing service and no centralized information source for parents, they're just groping in the dark. It's very difficult for them.
Mr Cooke: There's got to be empowerment of local offices and that's who you deal with, that you don't have to keep dealing with some head office. There's got to be some empowerment to the community and at the local level.
Mr Carroll: Thank you, gentlemen. The first thing I'd like to do is a quick comment about something Mr Cooke said to the previous presenter. He said this government should look at why it didn't provide extra funding for special services at home rather than give a tax cut to the hardworking people of Ontario. He should probably dwell on the same question about why they didn't provide extra money for special services at home rather than run up $50 billion in debt. I just wanted to make that point.
Gentlemen, I want to compliment you on the fact that you are not sitting still, that you are moving ahead in trying to do better with less. I understand you agree with the idea of individualized funding, competition among providers, profit and not-for-profit. Is that fair to say?
Mr Archinoff: Be careful. I think you're jumping ahead a little bit. We didn't say that individualized funding is the way to go or competition is the way to go. You have to give control to families. That doesn't necessarily mean you give them the money.
Mr Carroll: No, I'm not saying give them the money. I'm just saying --
Mr Archinoff: "Individualized funding" means different things to different people, because I don't think we have a good --
Mr Carroll: Maybe "individualized assessment" would be better rather than "funding." I understand. I think we're on the same wavelength.
Your presentation says you represent a group of 52 transfer payment agencies serving 5,000 people. As a layman, the first question that pops into my head is, is that part of the problem? Can you comment on that, 52 transfer payment agencies servicing 5,000 people? Is that part of the problem?
Mr Archinoff: Are you saying there are too many? What aspect are you driving at?
Mr Carroll: Could we get by with fewer transfer payment agencies than 52 for 5,000 people?
Mr Archinoff: You're suggesting that savings could be achieved by amalgamating some agencies, that there could be some savings on administration costs? Presumably that's what you're driving at. You're not suggesting that we serve fewer people?
Mr Carroll: Oh, no. I'm not suggesting that, or I'm not suggesting cutting any services. I'm just saying that each one of those agencies has to have an organization.
Mr Archinoff: No, not necessarily. Because of the cuts that have happened already, the agencies have trimmed administration back pretty much as far as it can go.
One of the things we are looking at in this restructuring exercise -- we don't know what's going to come out of it yet, but it may be that if certain agencies are providing basically the same services to the same type of people, maybe it doesn't make sense to amalgamate. I wouldn't preclude it. But each of those agencies grew up for a reason. Some of them are small and they serve certain types of people. If you start just throwing everybody into the same basket, you are defeating the purpose of what we're trying to do, and that's trying to meet the needs of the individual person.
Mr Carroll: Didn't you talk about one entry point, though?
Mr Archinoff: No. I said access to information, a single point of contact to get information. That doesn't mean a single entry point who assesses everybody. Again, don't throw everybody into the same basket.
Mr Carroll: I'm not suggesting that.
Mr Archinoff: People would just like, say, a 1-800 number to phone: "This is the type of information I need. Where can I get it? These are the type of problems I'm having. Who can I speak to?"
Mr Carroll: But you don't think, necessarily, that this government funding 52 different social service agencies for 5,000 handicapped people in the city is part of the problem? You don't think that?
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Mr Johnston: Can I make one point? First of all, the 52 agencies aren't 52 agencies dedicated to servicing developmentally handicapped people. We encourage people to join MARC, such as the YMCA, who might be able to serve developmentally handicapped adults in one of their programs. That's one, and there are many other agencies like that. There is a small core of agencies that do nothing other than serve developmentally handicapped individuals, and you probably know them as well as I do. They've often grown up as a result of these religious communities or whatever being able to come together and provide these kinds of services, whether it be the Reena Foundation or others. I don't want you to think there are 52 agencies all of whom are doing this 100% of their time. It's a much smaller number that are dedicated to doing this.
We encourage people who provide any kind of service to the developmentally handicapped to belong to MARC so that together -- you see, to us it's a holistic thing. It's recreational programs, it's all kinds of programs that go into enriching the life of a developmentally handicapped individual. The more we can plan for that holistically, the better off we are. We're encouraging that inclusion in MARC so we can sit at the table and debate the kinds of programs people should have. Personally, I don't think 52 is a problem.
The Chair: Mr Archinoff, last comment.
Mr Archinoff: I'm not here to defend the current structure of the sector and neither is Jim. If it makes sense and will provide better service or allow more people to receive service by amalgamating some agencies, fine, but please don't think that the answer is simply amalgamation. That would really just be the tip of the iceberg. It's a much bigger problem than that.
Mr Carroll: What we're trying to do, all of us, you and us, is to provide better services to more people with a limited amount of resources.
Mr Archinoff: Correct.
The Chair: Gentlemen, thank you kindly for your presentation. We appreciate your taking the time. I hope everything goes well with your offspring this afternoon.
Mrs Johns: And congratulations on your award.
Mr Johnston: No, no. My children's award.
FEDERATION OF ONTARIO FACILITY LIAISON GROUPS
The Chair: We now have the Federation of Ontario Facility Liaison Groups, Mr Pavlov and Mr Paproski. Welcome to the hearings. We look forward to your presentation. Please introduce yourselves and proceed.
Mr Chris Pavlov: My name is Chris Pavlov. I'm the first vice-president of the federation. I'd like to introduce Dennis Paproski, our second vice-president, and I'd like to thank the committee for this opportunity to be here today.
Because the federation is essentially an umbrella group of many smaller parent and family organizations of regional centres in Ontario, I'd like to quickly introduce the people who are here. From Huronia Helpers, Huronia Regional Centre, we have Mrs Joan Rowe-Sleeman and Ms Janet Allingham; from the Family and Friends of Edgar Adult Occupational Centre, we have Mr John Greenland and Mr Ken Parilyn; from the Families' Association of Midwestern Regional Centre, we have Mr Graydon Hulse; from Macaulay Mountain Community Association, Prince Edward Heights Regional Centre, we have Mrs Deborah Burns, Mr Don Dano, Mrs Dano and Reverend R. James; and from Oaklands Family Association, we have Mrs Margaret Gorman and Mrs Kit Nero.
Since your time is precious, we will try to be as focused and as explicit as possible in our presentation. As I mentioned, we are an umbrella group and represent the views of many family organizations.
The primary focus of our presence here today is to underline the critical need for comprehensive facility care for people with developmental disabilities throughout Ontario. We feel such facilities must continue to be one of the options along a continuum of supports and services required to serve the preferences, needs and abilities of persons with developmental disabilities. These disabilities can range from a mild affliction to a profound handicap.
The federation supports the comprehensive congregate care option for those people who have severe to profound disabilities and for those who choose this option. These individuals often require a structured environment where services are consistent and accessible. These could be, for example, medical, dental, educational, social, hygienic, dietary. Encompassing those areas is a 24-hour-care priority, as well as fitness and kinesiology.
While we applaud the move towards integration -- and I must emphasize that we do applaud the move towards integration for the children and adults who are capable of adapting to those situations, a more integrated community living, as it's known in this day and age -- we feel the purpose that brought about the congregate care facilities such as Huronia, such as Edgar, still exists. The purpose for the creation of those centres still exists, and that is to provide an environment that best meets the needs of the developmentally handicapped, an environment in which the individual can effectively assimilate and deal with his or her surroundings without feeling overwhelmed, threatened or inadequate.
Much of the disdain about facilities comes from the word "institution." We like to use the words "congregate care facility" or just "facility." It's not a word that I would associate with many of the facilities that are currently in Ontario right now. They're based on a home-like environment. They have changed greatly over the years. The number of residents per residential unit is similar to a large family. Services are accessible and onsite. These specialized communities -- really, in many ways we feel that they are communities in every respect -- provide abundant time for interaction with friends, with peers, with staff, with the surrounding community, and most importantly with family. Family is very accessible to these centres. The perception that they're locked away is just not true.
That gives you kind of a focus of the heart of our organization. I'll now turn it over to Dennis for some more specifics.
Mr Dennis Paproski: Unfortunately for you, I'm not going to read anything. You'll have the papers to take with you. There's an executive summary on the first page for those of you who are too busy to read the other 10. But I'd like to address the subject of the impact of the Conservative government's funding and funding cuts on persons with developmental disabilities and their families as it relates to persons living in facilities and to those now living in the so-called community, those served or not served, as the case may be, by volunteer-led social service delivery agencies. You can't separate the two.
In relation to facility living, the current government's announcements respecting closure and downsizing are not part of a new policy. They are part of a multi-year plan that was launched in 1982 based on the conventional wisdom of the 1970s. We have several studies that have evaluated the impact of that plan and its implementation over the first 10 years of that plan. We'll come back to looking at those objective evaluations in just a minute.
We're now talking about the residual population at the facilities. The first five years called for 1,000 people to be moved out into the community, the 1,000 least handicapped people. The second five-year plan did the same thing. The people we have left in facilities are all adults today. They are all multiple, profoundly or severely handicapped people, so the current government's actions to close these facilities and to save money are based on some erroneous assumptions about the people who would be moved to the community and their needs in the community.
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For the community agencies -- and you've heard this from the previous group but I'll just repeat our line on it -- the Progressive Conservative cutbacks are a continuation of those started by the NDP. But being relatively larger and because they come following years of chiselling away at the community system, they are no longer cutting away the fat; they are striking at the vital organs of the supports and services provided by community-based agencies. To illustrate that this is the case, that things are getting worse and not better in the community, one only has to consult the growing waiting lists and the closures of day programs provided to people in the communities who are lucky enough to get into any programs at all.
The assumptions which underlie the renewed obsession with closure and downsizing of facilities are just as naïve, or perhaps cynical, as they were in the 1970s, when they were formulated. We rely on two evaluations of experience with downsizing and closure under the multi-year plan to substantiate this contention.
Harper and Baker, the first study, was written in 1986 about the first five years of the plan, and it noted the critical underlying assumptions as following:
The first is that the community is ready, willing and able to accept transfers of persons from the facilities and to provide an equal or better quality of care in the communities. Not so, say Harper and Baker -- by the way, these reports were developed for MCSS itself -- unless there is, up front, a huge infusion of money and skills into the communities to prepare for these people being transferred.
The second assumption is that community living is way less costly and therefore moneys can be freed up to help the community look after its waiting lists. Not so, say the authors of this report, because relatively high-needs persons from the facilities cost way more than anticipated, and one should therefore not expect there to be savings to help relieve community waiting lists.
The second evaluation, for the period 1986-91, was by Vickers, who reported in 1991 that the assumption that community based agencies have the personnel, money, skills etc to ensure maintenance of quality of life for those leaving the facilities was simply wrong. He maintained that success could only come if comprehensive supports and services and fully adequate supply were developed first. He also noted that the remaining facility populations, adults in fact, were also highly handicapped, requiring greater supports than those who were first to leave the facilities.
I guess the saddest part of all is that there is no evaluation available to the public concerning the performance of the downsizing in the third five-year period, 1991-96, just the same old rhetoric from MCSS and OACL ideology we have heard since the 1970s. But the reduced base-funding grants to the community agencies over the past five years and the growing community waiting lists suggest that things have got worse, not better, than in 1991.
Yes, community living for children who have developmental disabilities has improved over the last 10 to 12 years because the Ministry of Education, or actually the school boards, which are now being amalgamated -- because of that education system accepting responsibility for the day programs of children; that is, people under 21. But facility residents are all 30 years old or older and all require very profound care.
The proof, by MCSS's own evaluation, is that the community is not able at this time to assume responsibility for highly vulnerable adults who prefer care in today's facilities. Moreover, it is highly unlikely that forcing handicapped individuals to move to inadequate community programs will save the government any money and thereby help the thousands who are already in the community and on waiting lists with no programs.
Both in the executive summary and on page 10 of our report we end up with a recommendation, and that is simply: A moratorium should be declared on closure and downsizing of facilities to permit scientific analysis and policy adjustment that will ensure that the lessons of history are applied and mistakes of the past are not repeated. Good economics, as well as compassion and, dare I say it, common sense, demands no less.
We would love to answer any questions you have or record any of your comments.
The Chair: Thank you very much for your presentation. The NDP isn't here, so the government side can lead off. We have about seven minutes for each party.
Mr Carroll: Thank you for coming forward today. I have had the opportunity to visit, in several cases, Southwestern Regional Centre, so I understand a lot of what you say. The arguments made by the people on the other side of this story, primarily people from the Association for Community Living, are also very persuasive about why you're not right and why people should all be put into the community. Our particular program right now is that we have said we have a plan till 1999, at which time we will revisit the whole issue.
The Association for Community Living people say that every single person who is currently living in an institution can be taken care of, to their advantage, in the community. Why do they say that if that's not true?
Mr Paproski: I think there's a difference between ideology and a difference between an objective evaluation of what's going on. The obsession -- I use the word purposefully -- with closure is based on an image that is outdated. The contention on our part is simply that people should have a choice. The OACL ideology does not allow choice. It is their way or no way: "You will be integrated, whether you like it or not, whether you choose to or not." If somebody told you, sir, that you couldn't go into a senior citizens' residence, what would you say?
Mrs Johns: Better say you're not ready yet.
Mr Paproski: In your own good time.
Mr Carroll: I would hope so.
Mr Paproski: But the other side of the coin is that there is a fallacy that somehow or other these people can live in the community with an equal or better quality of life. I happen to also be a member of a community association board of directors and I can tell you that in Ottawa-Carleton we've been cutting back day programs for adults, that we have growing waiting lists.
I can talk on this issue from both sides. I can tell you that for my child, if she could talk, her preference and the preference of her parents would be that she live in a group home like she does at Rideau Regional Centre. It seems to me very presumptuous on the part of OACL leadership, or MCSS leadership for that matter, to tell me that they know better than I do what is good for my daughter. My daughter is a number to them. My daughter is a target of an ideology. My daughter is my daughter and I know her better than anybody. I don't presume to tell them how to run their lives and I don't expect them to tell us how to run ours.
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Mr Carroll: Given the fact that we think people should have a choice, and I'm not so sure I disagree with that, could the group of institutions we talk about be a lot smaller than they are now? Southwestern Regional Centre is a 1,200-bed facility. Do we need that size of facility? Is there an option somewhere in the middle between a group home that holds four people and an institution that holds 1,200?
Mr Paproski: May I just make a comment? The facilities targeted for closure are the smallest ones in the system. Explain that to me. It's not Rideau Regional Centre, with 700-something, not Southwestern, with 600-something. It's the smallest ones, the ones that have adapted to a community-like presence for their people, like Macaulay Mountain or Prince Edward Heights. These are documented in the paper we've given you.
Perhaps I'm turning the thing around and saying, what is the rationale for taking the smallest and closing them down first? The only rationale could be per diem costs. As we argue, you can't reduce the population of a facility that was designed for 600 people and blame it on the administration or whatever for the rise in average per diem costs. You've taken it from its optimum down. You've lost all the economies of scale that you designed into the system in the first place.
We're just saying, revisit before you keep on closing. Use the scientific evidence out there, use the rational approach to these things, and I think you may come around to our way of thinking.
Mr Kennedy: Thank you for your perspective and your presentation. I'm interested in what the conditions are like generally in the institutions. Have they been affected by cuts? Also, to follow up on that, tell us a little more about what your group's and the various liaison groups' confidence in the institutions is based on. I've certainly heard the argument about the inability of communities to absorb, but I'd like to better understand what families or others interested in the wellbeing of the people affected find beneficial about the institutions.
But first of all I want to know what's happening in the institutions. Have they been subject to cutbacks? Is there apprehension on the part of the families about what is coming up or what has been done about that population?
Mr Pavlov: That is very much on the minds of the individual families, particularly staffing cuts. That's the one aspect we appreciate about the facility, the high ratio of staff to residents.
But unfortunately, with cutbacks that has depleted. I don't have specific numbers at the moment, but it seems that in general the front-line workers, if you will, in direct contact with the residents are the first to be affected, before administration and support staff in the facility. That we find disturbing, because it is the front-line workers who are in direct contact with the residents and provide that one-on-one care. They're there when they get up in the morning for bathing, for meal time. That is of concern, and as we go through this exercise it will become more so.
Mr Paproski: In answer to that question, we will leave with the clerk the two reports to which I referred. She can make copies of them. There's also a report on the profile of people who might be moving from Rideau Regional to Ottawa-Carleton. It details the characteristics of the people in the facility and the requirements they would have once they got into the community. The community in Ottawa-Carleton cannot provide those supports.
You ask what's happened at the facilities. It depends a lot, of course, on the administrators; they are MCSS employees too. In some cases, some of the administrators have been able to use vacated space for social activity areas, for education centres and what have you. In other cases, more and more people have been consolidated into -- dare I used the word -- wards. There are all sorts of performances. They are not perfect, by any stretch of the imagination, and nobody in our organization would say they were. I think you will find our paper balanced and enlightening in that respect.
Mr Kennedy: If the information is available -- I didn't see this in the quick time I had to go through the paper. You seem to feel your organization stands for what is more or less the forgotten option, or the option not being well considered by this government, as you've noted, or by previous governments. But has there actually been cause for concern about the status of the people affected, or are we still dealing mainly with theoretical impacts in terms of what's going to happen in the future? I don't mean that those aren't real, and there is a strong pronounced trend away from the institutions, just reannounced and confirmed. I'm wondering about the quality of life available in institutions. I'm not presuming good or bad; I'm just wondering. Has it gotten better or worse under both the funding constraint and what you refer to as the ideological outlook away from those kinds of settings?
Mr Carroll: He wants to criticize us.
Mr Kennedy: Not at all. Mr Carroll, you misconstrued the question; I'm sorry you'd seek to interrupt. I'm really asking, from a standpoint with which I'm sure you're familiar, how things have been in the last year, if they have been better or if they are fine, even with prospects for improvement as the space is vacated and so on, which is what I gathered from the last answer. I just wanted to see if there are any other more direct references to the wellbeing of the people there. I'm certainly satisfied with the answers you've given so far.
Mr Paproski: It's a mixed bag. There is no whole answer for that question. It does seem to me that not all the opportunities have been taken advantage of by the administrators. The actual closure and downsizing process is very disturbing, very stressful. The closure part of it is horrendously stressful to the individuals who don't understand what they have done wrong to be kicked out of the home they've known for 25 years and in the process to have services and supports withdrawn as the facility becomes smaller and smaller. The parents are told that they play ball with the MCSS officials or they will have no options available to them. They are threatened. They have been threatened. The people before us, from MARC, alluded to it. We feel we're being threatened by the people who make the decisions. They are supposed to be serving our needs.
Mr Gravelle: You certainly make a very compelling argument for the fact that decisions are being made for the wrong reasons, that they're being made on the basis that "It's easier to close this place or do something else because we can save that portion than to do other things." I think it is important to get that message across, that either the government is committed to a legitimate support system for those people, whom they say they want to support, or they're not. What you're telling us even in terms of ministry staff is a demanding and unfortunate approach that obviously is upsetting.
As I pointed out earlier, I have a brother who is in a group home -- he's developmentally challenged -- and the same things bother us. You referred to some of the decisions in terms of staff cuts being from front-line as opposed to administrative. On a personal basis, our family has gone through that, and you find yourself making decisions.
One finds oneself being critical of the OACL sometimes, but it seems to me that what's happening is that they are being put in a position where they are forced to make decisions. We may not agree with their decisions, but the bottom line is that they are having serious funding cuts imposed on them, and therefore they get -- you do sometimes shoot the messenger, I think. Although you don't necessarily agree with what they're doing, do you agree at all that it is based on decisions made by the government that less funding will be given out? There have been severe funding cuts that impact on any organization that's supposed to be delivering services.
Mr Paproski: You had a slip there; you referred to OACL instead of MCSS. Certainly the MCSS people try in some cases to work with the community. I think there's a lot of room for improvement in the relationship, not only with us but with the front-line delivery agencies in the communities as well. There is increasingly a downloading of responsibility and legal liability to volunteer boards at the same time as there is increasing control by MCSS over what you do at the local level, and the two are not consistent. If you want new ideas and innovative approaches, you don't get them by control from the top.
The Chair: Mr Paproski, Mr Pavlov and all of you who have come today from different parts of Ontario, thank you very much for attending and thank you also for the other background documentation, of which each member will have a copy.
The committee will resume next Monday. I would like to say, though, that I will be moved from this committee. I am disappointed, frankly, because I have found this a committee from which I have learned a great deal, and I've found that meaningful. I also felt that the committee has worked well. We've had, in relative terms, very good respect and civility and cooperation on the committee. I want to thank the clerk and Hansard and the researcher for helping to make my job very easy. I want to wish you all the very best in your deliberations. I know we'll bump into each other in other committees. Thank you very much.
I declare our committee adjourned.
The committee adjourned at 1801.