April 15, 2002

Parents of disabled youth fight for hope

By Deirdre Healey
deirdrehealey@hotmail.com

E rin O'Brien lies on the carpet listening to Irish music and enjoying the warmth of the sun shining through the living room window. While the music plays, the 27-year-old rolls around on the floor, feeling the energy of the fiddle. She shifts her bright blue eyes toward her mother Judy, who is sitting on the couch nearby, keeping a watchful eye on her.

Erin can never be left alone. She requires 24-hour care, seven days a week. Erin was born with Storage disease, which means she has a severe developmental delay both mentally and physically. She needs help walking, eating, going to the bathroom, bathing and she cannot communicate verbally. She is totally dependent.

Photo by Deirdre Healey

Erin relaxes in her bedroom.

"The doctor told us that she would be very, very, very slow developing," says O'Brien. "The most difficult thing is she can't tell you anything, ever. She can't tell you when she is hurt, or when she is sad or when she wants something."

Judy gave up her career as a teacher to take care of Erin's needs. Erin's father, helps out when he is not at work. Despite the extra costs of raising a child with developmental disabilities, this family must survive on only one income.

Photo by Deirdre Healey

Judy reads funny poems to Erin at home.

Three years ago Erin was still in high school. She had a place to go during the day where she would be around people her own age. She received the daily physiotherapy and occupational therapy that she needs and had opportunities to go out into the community. This all came to an end when she was graduated after being there the maximum of seven years, and had to leave the developmental centre at her school. Erin's parents do their best to provide a loving and stimulating environment, but they need help and Erin needs a life.

There are several families like the O'Briens in London. Currently there are approximately 21 students with severe developmental disabilities who have graduated from high schools in the past three years, and the numbers are increasing. Many of the families came to London to take advantage of the excellent paediatric care, and thanks to advancements in medical technology children with developmental disabilities are living longer.

However, the province has not anticipated that these individuals would live into their adult years. Programs or supports that families require in order to keep their adult children at home after high school are not there. There is no long-term plan.

When individuals with high care needs finish high school they lose access to needed therapies and stimulation. Parents lose 40 hours of weekly support. For other students graduating from high school it is only the beginning of their lives, but for individuals with severe developmental disabilities everything is over for them.

"There is nothing for them except reverting back to home," says O'Brien. "There are no full-day programs."

Betty Giroux, head of special education at Sir Frederick Banting Secondary School in London, is directly involved with this population and has seen the problems that parents are faced with when their child's time at the developmental centre is up. "We talk with the parents early on about the transition from high school," says Giroux. "I hate that process because there isn't really anywhere for them to go, but it forces the parents to think it through and figure out where they see their child when they are 21. It forces them to come to grips."

It is very difficult for the parents and their children to adjust after they leave the centre. Often any basic skill that they learn at the centre through daily repetition - such as bringing a glass to their mouth - is lost, which makes their care more difficult. Also, many of these parents are in their sixties when their child leaves high school and are unable to cope financially or physically with having them home 24 hours a day. The only other option left for them is to put their child on a waiting list for a group home.

In Ontario, government funding is set up so the parents who choose to keep their children at home and take care of them themselves receive less financial support than facilities or share home placements would. "Because Erin is at home and we are doing everything, she gets the minimum," says O'Brien. "If she went into a facility immediately she would receive the maximum. That isn't right. Why don't we, who do all the care and are saving the government money, get the maximum?"

It would cost the government a minimum of $60,000 to take care of an individual with severe developmental disabilities in an adult group home setting and institutionalization would cost approximately $100,000 a year. On average, most individuals receive Ontario Disability Pension, which ranges from $650 to $708 a month.

Because of Erin's multiple disabilities, she receives additional funds allocated to cover some of the costs for vital therapies and other necessary interventions. "It costs more than $1,000 a month for her to have physiotherapy once a week, so that is where a lot of the allocated funding goes," says O'Brien. The rest of the money goes toward having a support person come to their house once a week for a couple of hours so that they can go to church.

There is no system in place that determines how much funding individual families get, sometimes it just depends on how much noise you make. "We got right in their face," says O'Brien. "I think they gave us the money so they wouldn't have to listen to us anymore."

This lack of planning by the province dates back to 30 years ago when the decision was made to phase out institutions and to encourage parents to keep their developmentally disabled children at home. Realizing that parents caring for these children at home would need additional support, the Ministry of Community and Social Services and Ministry of Health provided supportive community-based programs for some of these children.

To further support this particular population in their homes and communities, the enactment of the special education legislation, Bill 82, in 1985 gave these and other exceptional children in Ontario the right to educational support in elementary and secondary schools. These developmentally disabled children, now in their twenties, who have lived at home with their families since birth, and attended local schools, are graduating from secondary school settings and have no place to go but home.

Although the government started out with good intentions and did set up some support programs, it failed to extend the continuity of support and services to adult life. "The government legislated these individuals into the education system without any forethought of the future," says O'Brien.

In London there is Partners in Leisure and Partners in Employment. Both programs require that the participant be able to direct their own care. Individuals with severe developmental disabilities are unable to direct their own care, and are not eligible unless they provide their own attendant care.

Diane Cunningham, the MPP for London North and Minister of Training, Colleges and Universities, agrees that there needs to be more programs for this particular group. In December, she brought all the community groups together to see what day programs were available in London for people with a wide range of disabilities. Cunningham found some groups had programs while others had nothing. "At the higher end there are people who have many opportunities," says Cunningham. "But the severely developmentally disabled need both social services and health services, and that is most challenging to take care of. Right now we don't have support for 24 hour care at home."

Cunningham says that programs in London need to improve because of the high population of young adults with severe developmental disabilities living in the city. "The number of young adults with severe disabilities is increasing in London because of the neonatal care given to them in the 1970s. We need more money for parents who decide to keep their severely disabled children at home."

The O'Briens, along with several other parents of developmentally disabled children, have responded and formed a local group called Family-Directed Alternative Support Services. This organization offers support and advice to families, especially those who will soon have children leaving the school system. Cunningham has spoken with members of Family-Directed to determine what type of supports parents of children with severe developmental disabilities require. She continues to work to make the government aware of the need for day programs.

Family-Directed members, Maria and Bruno Sinosic, agree that it is the government's lack of understanding that is impeding the implementation of any day programs. "Anyone who does not live with a severely challenged individual wouldn't really understand what it takes to care for them. Perhaps they don't understand all of the demands and all of the needs of the children and their families," says Marian Sinosic. "There is also a lack of desire and lack of will to really focus on the needs of these kids."

Bruno Sinosic has a book full of about 100 programs for individuals with developmental disabilities. None are suitable for his daughter, Christine. "I can see where politicians think that there are programs out there," says Sinosic. "It is a case of honest ignorance and that's why you have to keep lobbying."

Photo by Deirdre Healey

Christine's parents are getting her ready for dinner.

Christine Sinosic has Rett syndrome, which is believed to be a genetic condition found only in females. She has a severe developmental delay, loss of purposeful use of her hands, suffers from sclerosis, seizures and poor circulation in her legs. Like Erin, Christine requires assistance with everything.

Right now, Christine receives the therapy and stimulation she needs, at the developmental centre in John Paul II high school in London. She loves to help the staff deliver the mail to all the departments in the school, and goes with them on trips to the grocery store.

Photo by Deirdre Healey

Maria feeds Christine.

Christine will be graduated in June and her mother is worried about what her daughter will lose. "She would miss the camaraderie of her friends she made there. She would miss some purpose to her day. She would miss out on her therapy and all the school outings. She looks forward to going to school. When I tell her that it is a school day, I get a big smile in response."

Maria Sinosic, who was an elementary school principal, took early retirement last year in anticipation to help her already-retired husband take care of Christine when she leaves school. "Now our full-time job is to look after Crissy and our home to make it a good spot for her to be."

Sinosic is very uncertain about her family's future, but she refuses to consider placing Christine in a group home. "She is a member of our family and we love her dearly. She has a right to have a family and we want her with us. We can give her a quality of life that she couldn't get in a group home."

Many parents feel that group homes are just not an option, and are fighting for their children's right to have a life. Parents feel they need to speak out and act on behalf of their children who cannot advocate for themselves. This strong passion and love for their children is what spurred Family-Directed to develop another option. One answer is Project Hope, 'Help Opportunities for Participation and Enrichment'.

Project Hope is a day program designed for young adults who have a combination of physical, developmental and medical challenges, who require 24-hour support and who live at home because they are no longer eligible for educational support. The province has finally agreed to provide approximately $350,000 to fund 12 severely developmentally disabled young adults in a Project Hope setting after denying Family-Directed twice. Family-Directed will also seek additional funding from the community.

Joan Currie, who is actively involved in Project Hope, says that the program will act as a transition for these individuals coming out of high school so that their parents and the province have time to figure out where they will go next. "It makes sense that you would have something like this," says Currie. "It gives parents confidence, gives individuals time to adjust and gives the province time to plan."

The parents will design their child's program, to meet their specific needs. Currie says the program offers services similar to those received in a developmental centre. Project Hope will eventually provide overnight emergency respite care for participants.

Maria Sinosic, who has been actively involved in the implementation of Project Hope, is hoping that the program will be up and running by the time Christine is out of school. "Project Hope would be great for Christine because she could continue to receive stimulation, get her therapies and there would be rhythm to her day that is predictable. It would also give us a chance to recharge our batteries so that we can take better care of her at night."

The program is designed so that each participant will have a consistency of care by a trained caregiver. Currie says Project Hope will cost approximately half of what the province would pay for individuals to be supported in a residential facility, less than a third of the cost of long-term care and specific individuals will receive care and support that is suited to their own needs. "It's not one size fits all," says Currie.

O'Brien believes this program is worth the four long years it took to develop it. "Project Hope will allow Erin to have a life instead of just an existence. She will have friends and something to look forward to each day."

This provincially funded project is a small step in the right direction, but more needs to be done. Although the government has agreed to fund Project Hope, the program can only provide services for 12 severely developmentally disabled young adults in London.

Ultimately, families need more programs like this in London to provide a smooth transition of services for the entire population. This is an issue that has been around since the special education legislation, Bill 82, two decades ago. These parents' voices will only get stronger as more of these children are pushed through the public school system towards nothing. Appropriate day programs for young adults with severe developmental disabilities living at home with their parents can ensure that these children have meaningful lives. The most that the O'Briens can hope for is to keep Erin in a loving home until the time comes when they can no longer take care of her.