Self-Determination is the ability to assume greater control over and participate in decisions which affect one’s life and to make one’s own choices about the type of housing in which to live, where to live, with whom to live, the type of services received, and who provides these services.
Since 1997, when ALAW received a grant from the Pennsylvania Self-Determination Housing Project (SDHP), ALAW has been working to obtain affordable, self-determined housing in regular neighborhoods for adults with autism, enabling them to form households apart from their parents.
Over the past thirty years, deinstitutionalization has resulted in Americans with disabilities living in smaller community-based settings instead of large and often isolated institutions. But their housing and services are still packaged together and their choices are extremely limited. Many people with disabilities would prefer to make their own decisions about the type of housing they live in, and with whom they live, as well as choose the type of services they receive and who provides those services. ALAW believes that housing should be separated from services, allowing choice in both areas.
Initial self-determined housing for participants in the Autism Pilot Program included the following living arrangements: three men sharing a three-bedroom twin home; one man living in a condominium; another man living in a subsidized apartment; two other women sharing a two-bedroom townhouse; and one woman renting an apartment with another woman who has a disability other than autism. Some participants chose to remain living with their parents, and others have found apartments in the community. Various sources of funding, both public and private, are being tapped for housing purchases and rental assistance. In all cases the householders are helping to pay mortgages or rent out of their own incomes.
In 2000 several ALAW parents, with the help of a lawyer, formed (2) Limited Liability Companies (LLC) by applying to the Pennsylvania Department of State Corporation Bureau for a Certificate of Organization-Domestic Limited Liability Company and then applying to the IRS for an EIN number. The lawyer developed an Operating Agreement and a Management Agreement for each LLC. Each LLC owns a house and the participants rent from the LLC. Three adults live in one house, and two live in the other house. The parents are the “members” of the LLC, and ALAW is the manager. Parents contributed their own funds for a substantial down payment which accomplished an affordable rent for the participants. Each LLC has a Housing Choice Mainstream Voucher from the public housing authority.
In 2002 ALAW applied for and was awarded a Pennsylvania Housing Finance Agency (PHFA) Special Initiatives grant for the down payment and renovations of two houses. The grant funding allowed ALAW to provide housing to low-income persons with autism whose parents could not afford to contribute a substantial amount toward down payment and site improvement. ALAW rents each of the two houses to two adults with autism.
In 2009 ALAW was awarded a Section 811 from HUD to support the construction of a four unit building in West Philadelphia for four adults with autism. In addition the award provides an affordable rent and an annual subsidy to support the operating costs of the building.
- Some of the strengths of ALAW’s Self-Determination philosophy include:
- Self-Determination: choice of where to live and who to live with
- Establishes a permanent household; participants are not moved out and others moved in by a provider
- Housing is separate from supports (changing a provider does not mean moving out)
- Participants live in regular houses in regular neighborhoods within walking distance of shopping and public transportation
- Rent is affordable
- Households are small with no shared bedrooms
- A choice to live independently of parents
- No housing costs from Pennsylvania’s Department of Public Welfare
- By providing individualized, adequate, well-managed supports on a consistent basis, crisis intervention or inpatient treatment is unnecessary
- Community integration/inclusion: supports are individualized enabling participants to hold non-sheltered jobs, participate in volunteer and community activities, and pursue their own interests
- Self-Direction of services: provider works at the direction of the participant/family
- Participants have similar support needs within each setting
- Participants are able to form households without jeopardizing monetary limits for SSI and Medicaid
- The philosophy of Accommodated Living which enables adults with autism to live a regular adult life by supplying modifications, adaptations, supports, services
- The service approach is prosthetic (“help to do” rather than “do for”)
- People with autism continue to learn and develop new skills
Consistency, structure, predictability and stability are necessary
- Services accommodate sensory/motor, communication, and social challenges
- There are enough 1-1 hours for individual schedules, jobs and activities; overnight hours are shared for those needing around-the-clock supports