Centre for Independent Living In Toronto Planning Day

1. Centre for Independent Living In TorontoPlanning Day Sandra Carpenter, Executive Director

2. What is Independent Living ? • Independent Living can be defined as: - An attitude - A set of organizational principles - A set of program methods and resources

3. Early Guiding Principles of Independent Living • Those who know best the needs of disabled people and how to meet those needs are the disabled people themselves • The needs can be met most effectively by programs which provide a variety of services, rather than having to go to several different agencies for services • Disabled people should be as integrated as possible into the community

4. Looking Back…

5. A Brief History of I.L. • 1962 – Ed Roberts living with post-polio respiratory issues, quadriplegia and using an iron lung at night, enters the Univ. of Calif. Berkeley, in the Cowell Students’ hospital • 1969 – Twelve “severely disabled” students in wheelchairs isolated in the Cowell Residence ($ from Calif. Dept. rehab)

6. Brief History of I.L. • 1969-70 Four block section of Berkely’s main shopping area south of campus made accessible with ramps at urging of Cowell Residents • 1969 – Time of civil and women’s rights, students protest. Critical mass of people were formed • 1969-72 Autumn – I.L. philosophy was developed. First Independent Living centre established in Berkeley

7. Berkeley Independent Living Centre • "Helpless cripple attends classes at UC," proclaimed a headline in the Berkeley Gazette in 1963. Time was to prove the irony of the title, and the article became a treasure in one of the Bancroft Library's newest collections. • PHOTO: Don Galloway, manager of blind services, and Ed Roberts, executive director of the fledgling Center for Independent Living, in 1974 on the Berkeley campus.

8. History of CILT • No accessible transit • No curb cuts • No community services • Low employment prospects • Some support for education • No attendant services in the community

9. Children at Bloorview Hospital • No acceptable destination • Medical model of service • Alternatives were desperately needed

10. Parent Work Group • Families of disabled children and others lobbied government for support for an alternative • Invited teenage residents to the table • They outlined their vision of care/help and housing for adults with disabilities

11. The Dream • Self-determination, autonomy • Decide what to do, what to wear, what to eat • Apartments in a regular high-rise • Come and go as you please • Staff appeared when needed • otherwise out of the apartment • Could be friends if desired • Government to pay costs of staffing • Person with a disability pays ordinary costs of rent, food, recreation, transportation, phone etc.

12. Response • Parents were initially disappointed at our “ideal” and “unrealistic” proposal • Government bureaucrats like David Pitt heard the message • Policy staff at MCSS work behind the scenes • Creativity • Options

13. Alternatives… • Group Home Model option began • Group Captain Leonard Cheshire, England • BUT Fire Marshall vetoed people living there unless they could exit independently in case of fire • So 98% of Bloorview’s residents were not eligible for any Cheshire Home Cheshire: The Biography of Leonard Cheshire Vc, Om

14. Pilot Projects • Government funded 4 pilot projects around Ontario in 1975 for a 3 year-trial – HAGI in Thunder Bay, ALPHA in Windsor, Ottawa Rehab Institute and Clarendon Foundation for Toronto • Ironically, policies closely reflected the Thompson-Carpenter vision • Clarendon • 9 adults on one floor (converted office space) • 4 apartments (shared living), plus 1 bachelor apt. • Non-medical attendants available from 6 am to 11 pm only • Huge emphasis on demonstrating how cheap it was compared to nursing homes

15. Alternatives… • Judith Snow, through tenacity and an alliance with MCSS Deputy Art Daniels, got attendant services privately funded through an Order-in-Council so she could: • Live in the community and • Hire her own attendants • See “From Behind the Piano” available from Inclusion Press http://www.inclusion.com/bkfrombehindthepiano.html • Although not intended to set a precedent, requests for Orders-in-Council increased exponentially!

16. Brief History of I.L. • 1980-82 Gerben Dejong speaks in Canada – First Canadian I.L.C. established

17. Goals of Independent Living in Canada • To promote and enable the progressive process of citizens with disabilities taking responsibility for the development and management of personal and community resources

18. Current Guiding Principles ofIndependent Living in Canada • At an individual level, Independent Living is the right to: • Examine choices • Make decisions • Take risks • Make mistakes • Take responsibility for one’s own life

19. Current Guiding Principles ofIndependent Living in Canada • At an organizational level, Independent Living means: • Consumer-controlled • Community-based (grass roots) • Cross-disability focus • Promotion of integration and participation (housing, employment, education)

20. Core Programs • Information referral • IL Skills Training • Peer Support • Research and Demonstration Capacity

21. Scope • There are 12 ILRC’s in Ontario • There are 28 ILRC’s in Canada • All have the core programs but because of the research and demonstration capacity can be quite different from each other

22. Centre for Independent Living In Toronto (CILT) • History

23. History of CILT 1982-85 • Formation and Incorporation; • COTA was original trustee; • Office established; • Needs survey designed; • Participatory action based research conducted; • Results analysed; • and service begins.

24. History of CILT cont. 1987-89 • Projects begin: “Radio Connection”, “Access Connections”. 1990 • Woodeden Consumer Conference; Literacy Link Survey and Attendant Services Directory published; “Disability Network” (CBC co-production) begins.

25. History of CILT cont. 1991 • Health and Welfare (Canada) funding cutbacks begin; MCSS funds Independent Living Skills Program; CILT newsletter upgraded. 1992 • I.L. and Participation in Research and The Literacy Book published; Youth Connection begins. • DF development phase begins

26. History of CILT cont. 1993 • Directory of Accessible Restaurants developed; new 24 Hour Newsline established; 1994-5 • DF Pilot Begins • United Way Membership Granted; award winning Abuse Prevention Video and Youth and Disability Abuse Prevention project completed.

27. History of CILT cont. 1996 • CILT agrees to run the Project Information Centre (PIC) for MOH; CILT by-laws updated. 1997 • DF Pilot evaluation from Roeher Institute; 4th Edition of Attendant Service Directory and Annotated Abuse/Prevention Bibliography published.

28. History of CILT cont. 1998 • DF gets full program status approved by MOH; program expended to 700 over 3 years. • CILT UW project funding to expand the Parenting with a Disability Network publish a resource Directory for Parents with a Disability. 1999 • The Parenting Book for Persons with a Disability published;

29. History of CILT cont. 2000 • Employment project (HRDC funded) Navigating the Waters launched; UW funding received to develop operational model for Nurturing Assistance. 2001 • Nurturing Assistance Guide Published; new statistics system introduced.

30. History of CILT cont. 2002 • New website launched, 2003 • New library software acquired and system implemented; 2004 • Anti-racism implementation plan developed; 2005 • Nurturing Assistance Guide published; 2006 • New data base system implemented;

31. History of CILT cont. 2007 • Gateway to Cancer Screening Project begins, Human Right Monitoring Project begins. 2008 • Safe Engaged Environment Disability begins, new office location. 2009 • Partnership with A2E; 25th Anniversary, Rebel Wall

32. History of CILT cont. 2010 ?

33. Current Context

34. MISSION • “To promote and enable the progressive process of citizens with disabilities taking the responsibility for the development and management of their own personal and community resources.” • For people with disabilities by people with disabilities

35. Mandate • CILT is a consumer-controlled, community-based resource organization. We help people with disabilities to learn Independent Living skills and integrate into the community. CILT operates on the philosophy of the Independent Living movement which was developed in response to traditional rehabilitation services models. CILT's aim is to develop and implement dignified social services that empower individuals rather than create dependencies. We encourage people with disabilities to take control of their own lives by exercising their right to examine options, make choices, take risks and even make mistakes.

36. CILT PROGRAMS • Information and referral/networking • Peer Support including volunteer coordination and Parenting with a Disability Network • Independent Living Skills Training • Service Development Capacity* • PIC, DF, SASF, PDN • Transfer Payment Projects • CCIM, PSW Training Fund

37. CILT PARTNERS • Citizens with Disabilties – Ontario • Ethno-racial Coalition for People with Disabilities Ontario • Disability Rights Promotion International • Abilities Foundation • Independent Living Canada • Ontario Network of Independent Living Centres

38. CILT Partners cont. • Canadian Association of Muslims with Disabilities • Access to Entertainment

39. Committees • Sexuality and Access • Abuse Prevention • International Day of Persons with Disabilities • Provincial Liaison Committee for Persons with Physical Disabilities

40. Networks • Safe Engaged Environments – Disability • Gateways to Cancer Screening Project • Toronto Central LHIN Attendant Service Network

41. CILT Initiatives • Town Hall in partnership with Scadding Court planned for the Fall of 2010 • People in Motion (annual event – this Year we are sharing a booth with ERDCO and CAMD) • Joint Picnic (annual event with ERDCO, CSASIL) • RDSP workshops (ILC leadership)

42. PIC Background • Central clearinghouse for all applicants for attendant services in Toronto both Outreach Attendant Services and Supportive Housing • Currently there are around 657 “active applicants” • Of these we est. ¼ at some stage in process • The rest are waiting for Supportive Housing Units

43. In Ontario • CILT coordinates the Direct Funding Program • CILT Coordinates the Student Attendant Service Fund

44. Direct Funding • CILT coordinates all applicants to program • participants/self-managers manage their own attendant services & undertake all employer responsibilities/functions • CILT sends funds monthly allotments to program participants under contract • Clients report expenditures quarterly to CILT or through 3 satellite offices • Currently “active applicants” number about 300

45. What Is the Student Attendant Services Fund (SASF)? • A Contingency Fund • For students anywhere in Ontario who need attendant services to participate in post high school education or training programs • Attendant services are physical assistance with activities of daily living such as dressing, bathing, washing, toileting, transferring, and assistance with eating • Coordinated through Project Information Centre

46. Looking Forward…

47. No Barriers; No Limits!