Finding and maintaining housing or some form of assisted living arrangement are challenges for people with FASD and their families, as they are for those with other disabilities. An added complication is that most people with FASD do not qualify for Developmental Services Ontario (DSO) benefits.
Adolescents and adults with FASD, like their peers, want independence. But many lack the judgment to take on the responsibilities that come with it. Parents can expect their children to become more independent late, and should try to find life skills training to prepare the way. Lifelong guidance and structure are needed. With help from at least one person to act as “external brain”, people with FASD can move out and live with varying degrees of independence. This is really “interpendence”.
People with FASD often have trouble living alone in an apartment or in a rooming house without supervision. Those on ODSP can get money for an apartment, but “friends” they meet on the street may come to stay and cause eviction. People need varying amounts of supervision. Someone must be available, maybe by phone, to remind about appointments and medication and for health problems. Families are wise to keep valuables such as identity documents, medical records, phone numbers and mementos so that they are not lost during moves.
It will take experimentation to find what form of living arrangement works best, and this will depend on income or benefits and whether the person with FASD is doing training or is employed. A life coach or mentor would be invaluable, if available. There ought to be a range of choices: living on the family property or nearby, living with a host family or roommate or partner – with a higher functioning responsible person, or in a group setting with a supported independent living (SIL) arrangement. But there is a severe lack of supportive housing options. Group homes for people with developmental disabilities or mental illness may be an option, but can be a poor fit if there is a difference in functioning or of needs. Some people with FASD can’t follow ‘zero tolerance’ rules for alcohol and drugs and need individualized guidelines and help with addictions.
Someone, often parents, usually need to make sure that rent and utilities, phone and internet are paid automatically. Many people need help with shopping and preparing meals, particularly if there are health issues such as diabetes, and cleaning assistance or a homemaking service for cleanup regularly. Some parents are finding their own housing with other parents or non-profit organizations, using models like Habitat for Humanity or housing cooperatives.
One ad from an Ontario town might work for someone with FASD:
Assisted Living: Private Rooms Available in Adult Support Home For Adults 18+ with Developmental/Intellectual Disability and/or Mental Illness who can’t quite make it on their own. Supportive staff are on hand 24 hours a day and room and board rates are subsidized.
Options Bytown in Ottawa provides permanent homes and support services for people who need help to live independently. Some of the services offered include: housing case management, prevention of evictions, crisis intervention, referrals to various community resources, life skills training, social and recreational activities, computer training and health and nutritional counselling. They use a harm reduction model.
Provincial Housing initiatives
In March 2013 the Ontario Ministry of Community and Social Services Partnership Table created a Housing Study Group. At that time Ontario there were 12,000 adults with developmental disabilities seeking residential supports and opportunities across the province. Many have been waiting for more than a decade, and need housing that meets their particular needs and is affordable, sustainable, safe, and part of a neighbourhood community. The eight participants from the Partnership Table were representatives from disabilities and autism groups.
In September 2013 the Housing Study Group released an initial report, Ending the wait: an action agenda to address the housing crisis confronting Ontario adults with developmental disabilities with a three-year-action agenda.
On Feb. 21, 2014 the Ministry of Community and Social Services created an inter-ministerial housing task force to find innovative housing solutions for adults with developmental disabilities including autism. Ontario Ministry of Community and Social Services. New steps to better support people with a developmental disability.
None of these initiatives considered people living with FASD.
The Ontario Select Committee on Developmental Services has been holding hearings from October 2013 to the present. There were seven presentations across the province from members of the FASD community. We are pleased that their Interim report published March 2014 recognized FASD as a developmental disability and the fact that many people with FASD do not qualify for services. Supportive housing needs for people with developmental disabilities are highlighted. We are hopeful that FASD will be included in recommendations in the committee’s final report due in May 2014. http://ontla.on..ca/web/committee-proceedings/committee_reports.do?ParlCommID=8976&locale=en
Families with disabilities are banding together to explore alternative housing options
In the U.S. FASD Communities a nonprofit organization based in Honolulu, is working to create sustainable living communities across the United States. Supportive housing goals include providing models of shared, semi-independent, and independent housing with a variety of supports based on individual needs. They are asking for donations for their first home in Wisconsin.
Families Matter Cooperative in Ottawa, which helps families support their loved ones with developmental disabilities to become independent, held a four part series dealing with housing from June 2013 – Jan. 2014. Part 1: “Blueprint”. Shannon Lang from Woodstock and District Developmental Services (WDDS) presented. www.wdds.ca Part 2: “Foundation” was about zoning information, bylaws and building permits and lower cost rental alternatives; Part 3: “Framework” was about finances and insurance. In Part 4: “Pouring Concrete: Home Sweet Home” three families shared their stories of creating appropriate housing. A booklet is being prepared to synthesize the information in the series.
Models for supportive housing
In B.C. Whitecrow Village has an Interdependent Living Program for adults affected by FASD to address the need for: safety and self-direction within a trusted group; appropriate responsibilities and benefits; a base from which to interact with the larger community; non-prescriptive guidance from peers and supporters; routine and structure; a sense of being needed. One home is open as a pilot in Nanaimo where six adults with FASD are living interdependently – two of whom are “program mentors. They intend to establish several interdependent living arrangements and inspire similar projects. Research and information gathering include the “particulars of long term leasing or of ownership; the most appropriate parties in whose name ownership should be designated; the effect of shared home ownership on disability pensions; the means of acquisition, mortgage or lease payments, and insurance; and other responsibilities that coincide with home ownership or long term lease.”
Victoria Foundation FASD Action Fund Projects 2007-2011 included: Gitxsan Child & Family Services Society in Hazelton, B.C. granted $100,000 for a project called Ayookhl ga nit’iitsxwim ahl haa’nakthl gabiswit to design community-based housing and other services for families affected by FASD using strategies rooted in Gitxsan cultural traditions.
Ontario Federation of Indian Friendship Centres published Models for housing and program support for Aboriginal people with developmental disabilities. Toronto, [n.d.] Funded by Public Health Agency of Canada. Finding included a critical need for recognition of the worth and abilities of aboriginal people with developmental disabilities and the need for housing support services for them in an urban setting.
Brownstone, Lisa. Feasibility study into housing for people with Fetal Alcohol Spectrum Disorder for the Regina FASD Community Network, The Saskatchewan Fetal Alcohol Support Network and the Regina Community Clinic. June 2005. Funded by the National Homelessness Initiative. The lives of 14 people living with FASD were explored through interviews. Recommendations include education of the community, a continuum of supports and physical housing options.
Burns, Coleen. Report on supportive housing opportunities for adults with FASD. Lakeland Centre for FASD. Prepared for Northeast Persons for Disabilities Community Board, 2009.
Joannou, Ashlely. “New housing opens for people with FASD.” Yukon news. February 19, 2014.
A new apartment building in Whitehorse with 14 units for 16 people will provide a chance to live independently with staff on duty. Territorial and federal governments provided funding, helped by the City. Options for Independence Society will run the building.
Lang, Shannon. Alternative support and housing. Creating a home…supporting a life. WDDS Woodstock and District Developmental Services in partnership with Bysham Park Non-profit Housing Corporation and Woodmar Non-profit Corporation. January 2013
Includes Lessons to be learned and best practices; Identified models including ones in the Bruce Peninsula and Toronto; Some start with support first; Identified challenges. Bibliography.
Southern California FASD Information & Support Network. Special FASD Issues. Housing/Independent Living. Can persons with FASD live independently?
Housing; Housing for an FASD-affected adult with substance abuse issues; How parents can help their adult FASD-affected child live as independently as possible.