541 Days Road, Kingston, ON K7M3R8, CA
My mother was a professional ice skater. One day, after an ice show, she saw some kids and their parents eating out of the garbage. She was quite upset by this and she vowed to help less fortunate children once she hung up her skates. She married a farmer in Ottawa who agreed with her and they went to CAS to be foster parents. I was their first foster child and they eventually adopted me. They later adopted other children, two of whom were labelled with intellectual disabilities.
Ruthann came to the family when she was one year old. She had microcephaly and my parents were told by CAS that she would very likely die in her teens. Ron was abused and neglected as his parents had severe mental health issues. He spent his first two years in a crib. He developed severe grand mal seizures and was expected to only live to the age of five or six.
They were both on a waiting list for Rideau Regional Centre (RRC) but in 1958 and 1959 it was extremely overcrowded. My parents fell in love with both children. Doctors and CAS were surprised the kids were flourishing. CAS continued to update my parents on the waiting list at RRC. Mom and Dad went to visit the institution and came back in tears saying the children were not going to such a place. They said it was no place for kids and it was wrong for every reason. CAS was reluctant because they felt the children would be a significant burden. My parents couldn’t adopt them until the late 1960’s when they were 12 and 13 years old as, at that time, CAS had labelled the kids “not adoptable”.
Schools had just started Special Education classes and both Ron and Ruthann were enrolled in school. Both children stayed in Special Ed until they graduated high school. Ruthann insisted on going to college and went to Algonquin in the 1970s. She fought to attend despite her label of having an intellectual disability. At first the college said no. Ruthann wanted to take Office Administration and was successful in getting accepted. Another student partnered with Ruthann and they helped each other.
Ruthann graduated in the late 1970s. She was placed in a job by employment support services but it didn’t work out for a number of reasons. Ruthann did not give up and eventually she got the right job with the Federal Government. Ruthann is still there with an agency of the Crown, Canada Border Services. Now she is a successful Project Officer. She owns her own car and owns her home, shared with her brother Ron.
Ron attended high school. His school said he was not employable so he was sent to ARC Industries. He became withdrawn, depressed and lost appetite. Mom asked me for my help. I was working in Kingston as a Social Worker at that time. I saw the concerns and helped to identify, through employment services, that ARC Industries was not the right fit for Ron. – in fact it was doing more harm than good. A social worker in Ottawa listened to, and acted on the concerns and helped Ron get a job in a printing room doing photocopies, printing and other work. New management eventually abandoned the print shop and laid Ron off after 20 years of service. After many years of successful work, all he wanted was a gold watch and never got one. We disputed the employers’ actions and the employer agreed to continue Ron’s wages for a time until he found other work.
Employment Services helped Ron again to find a job with the federal government as a delivery person in the Department of Fisheries and Oceans on Bank Street. Still there, Ron is now 63 years old and loves his job. He has hardly missed a day of work in well over 29 years. It’s not perfect but it’s perfect for him. He has no pension or benefits but he is very happy. He has always been paid minimum wage and Ruthann helps him out. To Ron, his job is his life!
Ruthann was once engaged but her fiancé died very suddenly. She never wanted another significant relationship. Ron and Ruthann have always lived together. They wanted to buy a house and found a nice town house in Orleans. They are very proud homeowners who work together. They are always helped by their neighbours and are highly valued members of their community. Ron takes the bus everywhere. They are so proud and they are fully in control of their own lives. I am certain that if Ron and Ruthann had gone to Rideau Regional Centre, their prognoses would have played out and their lives would be very, very different!
Before my retirement, I worked as Executive Director of Community Living Essex County (CLEC). During the 2-day orientation for new staff, I would be the first speaker to welcome new employees. I would give everyone a printed story of my life to help explain my passion for work in the Developmental Services sector.
I got my Bachelor degree in Social Work in Indiana, just south of Chicago. While there, I became very involved in the civil rights movement with the Reverend Jesse Jackson. I lost friends and fellow students in the Vietnam war. I moved back to Canada and worked at Kingston Psychiatric Hospital (KPH) in the then Mental Retardation (MR) unit as a social worker. The MRU became Penrose Centre in 1974 and shifted from Ministry of Health to Ministry of Community and Social Services (MCSS).
In 1977 I was the director of Community Services and Penrose merged with Ongwanada. It was during this time that the talk of the first 5 year plan to close institutions started. In 1980 I became a program supervisor with MCSS and part of my work included involvement in the downsizing of RRC, St. Lawrence Regional in Brockville, Prince Edward Heights in Picton, and Penrose/Ongwanada in Kingston. My work included development of community services all across eastern Ontario.
In the 1970’s, I worked very closely with the late Dr. Bruce McCreary, Psychiatrist, on a multi-disciplinary team at Penrose. We travelled across Eastern Ontario working with families, schools and health units. As a team of psychologists, social workers, pediatricians etc, we assessed and wrote reports and recommendations for families and organizations attempting to develop services and supports. All institutions were overcrowded and families were desperately looking for help.
I left Kingston in 1985 and worked at Southwestern Regional Centre (SRC) in Cedar Springs for one year as part of a senior team. In 1985 the Child and Family Services Act introduced requirements, including that institutions unlock their doors for all kids under 18. I was an educator for senior management and offered support to management to prepare for downsizing. I worked with the facility to be more involved with community participation and worked with families to move kids back into the community.
In 1986, I began at CLEC as the Executive Director, and was reintroduced to some families who were planning for a move out of the institutions. In the first few years of the downsizing of institutions, CLEC received significant government support to build and buy homes. It was family lobbying that made this possible. We created residential services in the community that were available to people who chose CLEC to support them in their move from institutions, while at the same time assisted as many families as possible in Essex County.
Many adults came from the institutions’ “behavioural units”. Intrusive measures were used there to control behaviours, like electric shock therapy (cattle prods) and time out rooms (like closets). CLEC offered support for people with very significant challenges. Following advice from SRC, some quite intrusive supports were continued after moving to the community. Within months these supports were discontinued as people quickly adapted to their new life in community and were provided with the supports they needed to deal with challenges in their lives. Community professionals who were very helpful and very interested helped along the way. CLEC engaged Dave Hingsburger and Michael Small, amongst others, who helped to introduce more appropriate and community based approaches. Over time CLEC has become well known for success in supporting people with very challenging behaviours. The agency partnered with the local autism society to provide respite for younger families who struggled to find caregivers to allow the family to have a break. They now have considerable expertise with very challenging individuals including children, youth and adults with severe autism and other significant conditions. CLEC is funded as a specialized service provider in the southwestern region of Ontario.
Many families whose loved ones lived in institutions and throughout Essex County selected CLEC to support their family members. CLEC grew rapidly. In 1985 they served 65 people with a $2 million budget. Now the organization serves over 700 people with a budget of over $40 million. ‘Everyone was included’ was the attitude that allowed CLEC to never give up on anyone and this seemed to lead to success for everyone.
The transition from SRC to community was managed very well by the MCSS, amidst lots of controversy. The then Minister of MCSS, Sandra Pupatello, held firm with self-advocacy groups to ensure all provincially operated institutions closed in Ontario. They did a lot of planning for people leaving the institution amidst some time constraints, complexities, resources and challenges. The planning, especially in the last days, was a positive experience for hundreds of families. Some individuals moved several times to find their place in community. Families met with myself as the ED and the CLEC team to voice their needs. Then they would meet with the ministry planners and would contact CLEC or the agency of their choice to further their discussions and plans.
Many families limited by the loss of contact with their institutionalized loved one needed to rebuild their relationships. A couple of families who wanted their loved one to stay at SRC were guided to CLEC. They did not really choose CLEC. These same families, months later or less, were saying thank you and it was the best decision of their lives. Once in the community, people were able to renew contact with extended family and spend lots of time with their families.
The transition was generally very smooth. MCSS was helpful at figuring out resources, even over the short term, to develop the supports necessary. I speak very highly about the MCSS planning and resources throughout multiple facility initiatives.
There were a couple of challenges from subdivision owners in Essex County. A Ministry of Housing initiative for affordable housing provided funding to build a duplex. CLEC made an offer to the owner of land in a subdivision. This person was a very well known member of the community. At the 11th hour, the landowner refused to close on the sale. CLEC initiated a breach of contract action, as there was a risk of losing the grant funding. Local families came together and one family put together a petition against the owner of the land to speak on behalf of the neighbourhood who wanted to welcome all people of all abilities into the community. The community spoke! They settled out of court with the owner of the land paying all of the costs. However, due to time pressures on the funding, CLEC had to look for alternative lots. A family in the community offered to sell an excellent property and CLEC proceeded to build. This particular town was one of the first in the county to amend its’ bylaws to allow homes supporting people to locate in all residential areas.
Many homes owned by CLEC have 2-4 people living in them. In the rural areas there could be up to 5 people with a side apartment for 1 or 2 people. CLEC developed many creative options to assist people to live successfully within budget. Homes had to be sustainable and with a reasonable cost of delivery of services. Building sustainability was a consideration in every aspect of development. They were successful, as housing is somewhat more affordable in smaller communities. CLEC accessed many housing grants from the federal, provincial and municipal governments to assist in the development of affordable and accessible housing.
CLEC continually improves the design of homes to focus more on individual needs and to have families more involved. Many families today are awaiting services, passport funding and accommodation support. CLEC is increasing capacities, such as converting garages to small apartments etc., in an effort to help as many families as possible without affecting the quality of support to those already being served by the agency.
CLEC was fortunate in eventually finding most services in the community, ie medical, dental, etc. however some doctors and dentists were not familiar with serving people with intellectual disabilities. Some would only take on 2-3 patients, and the best doctors were quickly overwhelmed. Some effort was made to educate physicians to assist in understanding the needs of people with a disability. The late Dr. Bruce McCreary of Kingston, pioneered many efforts to educate physicians and other medical personnel about the needs of people with developmental disabilities.
Historically, there was a prevailing attitude that people with significant disabilities did not belong in the community. Local municipal and provincial officials supported community living in communities where there were attitudes that a “group home” would go up across the street and affect property values. The officials spoke out saying ‘people with disabilities have every right to live in our community!’ Over time, many neighbours became friends and supporters of their new neighbours.
The local boards of education were often not equipped to accept youth with significant challenges into their regular classes. Most people coming out of the institutions were adults, but there were some aged 18-21. There was creative work with the superintendents of all school boards to work together to make positive plans to include persons with significant challenges and to create opportunities that best supported each student.
CLEC has been a leader in working with employers to create meaningful jobs for anyone who wants to work. Several persons gained employment within 2 years or less of leaving the institution. CLEC began to downsize their sheltered workshop over 25 years ago and ended contract work almost a decade ago. They had fantastic success in employment, supported by the amalgamation of municipalities. They worked with communities, employers, families, everyone. They leveraged influence at all levels. They were committed to work together and learned a lot from the families and the people they served.
My underlying message is NEVER GIVE UP. Everybody’s life is valuable and we have no right to decide whether we can support any one person. We must respond to everyone to find or create support and the best life they can find in the community. Giving up has NEVER been an option!
Copyright © 2018 Community Living Kingston and District - All Rights Reserved
Powered by GoDaddy Website Builder