From Autism Transition Handbook
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CBS News' Video on Group Homes for Individuals with Autism
People living with Autism may need:
- Support in finding and maintaining housing
- Help in coordinating services
- Extra space or amenities
- A secure location/security features
- Flexibility to accommodate changing needs
- Access to public transportation
There are several fundamental elements that should be considered during the planning process:
- The development of a housing plan,
- The determination of a sponsor (which could be the individual with autism, his/her family, a group of families, a service agency, etc.),
- The identification of a professional housing developer, housing consultant or partnership with other housing professionals, depending upon the project’s complexity
- Site control (ownership such as fee simple, a housing cooperative, a limited liability corporation, a self directed support corporation or a long term lease).
- Financing, including public and private
- Management, operations and maintenance
- Provision of services such as those available through waivers
- House setting or arrangement (see below).
There are several different types of housing settings.
Remaining at home: Under this setting, a person living with Autism Spectrum Disorder would continue to live in his or her family home or the home of a relative. The ownership of the housing unit may change to benefit the individual. Alternatively, the house itself may be modified to provide increased autonomy for the adult with autism while enabling him or her to maintain connection to natural supports and familiar surroundings.
- Self Directed Support Corporations (SDSC) which was developed by the Vela Microboard Association. This is an incorporated organization composed of people who know and care about a person with a disability and is established to assist that person to plan for and obtain needed supports including housing. Several SCSC's have been used as a means of assisting homeowners with their home maintenance responsibilities, homes often owned by the individual's parent.
- HUD’s report on Accessory Housing Units
Family Living: Under this setting, a person with autism lives with a household other than his/her family of origin. This household is responsible for providing room and board and coordinating other services as appropriate to the needs of the individual. The host household may provide housing opportunities for one person or multiple people with autism. Most family living programs are operated in accordance with public regulations.
In Pennsylvania, there are two publicly regulated programs. The first, Life Sharing, is administered by the PA Department of Public Welfare Office of Developmental Programs, operates under PA's Code 6500 Family Living Home Regulations and is operated under contract with licensed provider agencies. The second, operated by PA Department of Aging, operates under PA Code Title 6, Aging, Chapter 21 Domiciliary Care and is administered through each county's Area Agency on Aging. (Housing Report, pages 28-30)
Renting an apartment or home: Under this setting, an individual rents an apartment or a house either alone or with others. The rent may be subsidized through a public program or paid in full by the individual. In some cases, a service provider or non-profit organization owns the rental units and also either provides or coordinates services. This is frequently referred to as supported housing or supported living. There are various public programs to reduce the amount of rent a household needs to pay for housing on the private market, typically down to 30% of their income. There are two general types of rental subsidies:
- Tenant Based Rental Assistance (TBRA): This is a subsidy that goes to the individual and can be used for the housing unit of his or her choice so long as the housing complies with program guidelines related to the market rent of the unit, the condition of the unit and sometimes the location. Unlike Project Based Rental Assistance (below), an individual who has TBRA can keep that assistance if he or she moves.
- Project Based Rental Assistance (PBRA): This is a subsidy that is connected to the housing unit itself. Generally, a household must meet the eligibility requirements for the housing unit in terms of income and other specific criteria, and then the rent is based on a percentage of the household’s income, generally 30%.
See Also: US Department of Housing and Urban Development, Low Rent Apartment Search
Purchasing a home. Under this setting, a person with autism would become a homeowner, either individually or along with others who may or may not also be living with autism. They could purchase a single family home or a condominium. The ownership can be structured in different ways. In some cases, each of the individuals is named on the deed and an Ownership Agreement is developed to account for changes such as one of the owners choosing to leave or if one of the owners dies. In others, the owners form a corporation and purchase shares in the ownership of their home. There are various financing mechanisms designed to reduce the cost of homeownership for low and moderate income households. These may be government subsidized programs that reduce down payment and closing costs or that reduce monthly payments. There are also numerous "first time homebuyer' programs offered through financial institutions that reduce costs to eligible buyers. These programs generally require the recipients to participate in pre-¬purchase homebuyer counseling. In some cases, programs can be combined to maximize assistance to the homebuyer.
Shared Housing: Share housing is a model in which two or more unrelated individuals share a home. Generally each individual has his/her own bedroom and shares a kitchen, dining room, living room and other common areas with the other residents of the house.
Intentional Communities: Under this setting, people live together in a community that is built around a shared belief system. Some communities are specifically established to provide a shared commitment to caring for people with disabilities. Others are focused on other types of shared interest or life style. These can be located in urban, suburban or rural areas.
Licensed Facilities: Licensed Facilities are those that must comply with the specific licensing requirements of their funding source. For those facilities that serve people living with autism, these licenses are typically those issued by the state health and welfare agency for people that meet the eligibility requirements of programs targeted to individuals with intellectual disabilities. The housing licensing requirements relate to such factors as the number of people living on a specific site, level of services provided, and health and safety standards.
Examples of Residential Communities for Adults with Autism:
- Sweet Water Spectrum is a non-profit residential community that was built with the intent of giving adults with autism an opportunity to discover their own paths in life as they live, grow, and flourish within an environment suited to their particular needs. The housing unit was designed to meet the needs of its residents: "a nesting pattern" was constructed to allow a resident to ease into a social situation, and on a larger scale, to ease into the community beyond Sweetwater. This residential community is designed to build up a productive community among adults with autism.
- Aacorn Farm's mission is to provide a dynamic residential and vocational program for adults with autism in an agricultural community that supports individuals in reaching their full potential through meaningful interactions, work, and leisure activities.
- Triform Camphill Community in New York is built on a model of community among adults with autism with the cultivation of independence and interdependence, and the adults live there for a time as students, then graduate.
- Richmond House is a non-profit organization that offers housing, structure and support, and a lively social environment specifically for adults with autism.
Opening Doors: A Discussion of Residential Options for Adults Living with Autism & Related Disorders A Collaborative Report by the Urban Land Institute Arizona, Southwest Autism Research & Resource Center and Arizona State University.
Community Connectors, University of Delaware Center for Disabilities Studies
Very Special Arts (VSA) Delaware's mission is to enhance the capabilities, confidence, and quality of life for individuals with disabilities by providing life-long learning opportunities in the arts. Within the organization is an artist-in-residence program in Kent County that builds the confidence of 17-21 year olds with autism or cognitive disabilities called the Charlton Transition Program at Delaware State University & Wesley College in Dover, DE. VSA Delaware has a variety of programs that provide opportunities to participate and achieve in the area of performing and visual arts.
If you would like to view state of the art design ideas for building a community home, please refer to the work being done by SUNY Binghamton and the New York State Office of Mental Retardation and Developmental Disabilities: Interior Design Supports - A Review and Recommendations for Supportive Functional Habilitation
Throughout the transition process, you can continue helping your young adult master many of the life skills associated with independence in the community. Your young adult may have mastered some of these skills, but others may be more difficult and/or quite complex (e.g., driving a car). As always, the best strategy is to prioritize the skills with the highest functional relevance (i.e., the ones he will actually use most often) as part of his transition plan.
Daily Living Skills
A variety of daily living skills increases in importance during the transition period. Start early and practice these skills so your young adult will be better able to take care of himself throughout adulthood. Remember, some of these skills may be specifically listed in his transition plan at school. The chart below lists various skill areas that may be helpful for your young adult to focus on during this time period. In Appendix: Budgeting, you will find two worksheets to complete with your young adult on the topic of budgeting and expenses. In addition, hands on banking for young adults provides video explanations of a variety of different money management skills.
- General Skills: Skill-Building Steps and Activities
- Money Management: Skill-Building Steps and Activities
- Transportation: Skill-Building Steps and Activities
Various health-related skills, such as fitness, nutrition, and managing doctor’s appointments, will help your child as an adult. In Appendix:Information about Exercise you will find a handout with tips and ideas for encouraging your child to exercise.
Long-Term Living in Pennsylvania
For a comprehensive report on housing in Pennsylvania, see the Pennsylvania DPW's April 2010 Housing Options for Adults with Autism Spectrum Disorder.
Long Term Living in PA: Finding long-term living arrangements for your daughter or son can be challenging. There are many options that are available including living in your home, in a community setting, and in an residential setting. Pennsylvania has a website called Long Term Living in PA that provides support for individuals with disabilities and their families in identifying the appropriate setting depending upon the needs of the individual. The site helps families determine the level of care needed with questions such as
- Does your son or daughter need reminders to get dressed, groom yourself, eat, and take medications, etc.?
- Does your daughter or son need assistance setting-up their bath?
- Does your son or daughter find assistance with meal preparation and housekeeping helpful?
- Does your daughter or son need an escort to participate in social activities or a one-on-one visit?
Medicaid Funded Options:
- ICF/MR Care: “Intermediate Care Facility" for [persons with] mental retardation and related conditions was added to the Title XIX Medicaid program in 1972. The ICF/MR regulations require that a person’s treatment occurs in a manner and in an environment which is normalizing and approximates everyday community life. The ICF/MR residential model was the first type of alternate housing developed for individuals with I/DD. Today ICF/MR’s are located in Pennsylvania campus and community settings and in some cases provide housing for up to 100 persons in one single location.
- Choice: Over the past 20 years, the philosophy for individuals with I/DD has shifted, giving individuals choices about their homes, their staff and their providers. There has also been a shift from large campus homes to smaller homes in the community. The result of this shift is the emergence of a wide array of community services. Some services that are currently provided include: in-home supports (in a family’s home), small group home setting, (4 individuals or less), and Life Sharing. The services are developed by the interdisciplinary team who determine the preferences and support needs of the individual and subsequently documented into an ISP (individualized Support Plan) (See Supports Coordination). The ISP then drives the services provided and therefore the reimbursable dollar. In Pennsylvania, the state uses Waivers to offer individuals (who meet the ICF/MR designation) with decentralized services in smaller community homes (four or fewer residents), and in family home settings. However, individuals with Autism with IQ's over 70 do not have access to the funding for any of these programs. Available options include: subsidized housing and voucher programs.
- Home and Community Based (HCBS) Services: The Medicaid Home and Community Based Services (HCBS) Program (aka "Waivers") is Pennsylvania's primary funding source for supports and services to help individuals with disabilities live in their homes and communities. Services offered go beyond those provided by Medical Assistance in order to help the individual remain in the community rather than being admitted to a Long Term Care Facilty. Eligibility for these waivers is generally based on the income of your son or daughter, not that of the parent. The Pennsylvania Department of Public Welfare administers 13 waiver programs of which four apply to individuals with Developmental and/or Intellectual Disabilities including Autism (Consolidated, Person/Family Directed, Autism and OBRA), and another three (Independence, Michael Dallas and COMMCARE) which may be applicable depending upon the primary diagnosis of your son or daughter. Each waiver has its own set of eligibility requirements, they are limited in availability (they are not an entitlement program like Medicaid) and may have long waiting lists. The Bureau of Autism Services oversees the Adult Autism and ACAP programs; ODP through the county MH/MR offices oversee the Consolidated and Person/Family Directed Waivers. For waiver service definitions click here
State Support Services for a detailed description of Home and Community Based Services in Pennsylvania.
There are a number of independent living models being explored across the state of Pennsylvania including:
For an excellent list of Lifesharing and other licensed residential facilities, please refer to the Pennsylvania Association of Resources (PAR)
The State of Pennsylvania offers a number of housing option for adults with Autism. Information on subsidized housing can be found on their website at http://www.dpw.state.pa.us/ServicesPrograms/Autism/AutismRsrc/Transitions/003676353.htm.
See also: Section below on Subsidized Housing.
Subsidized Housing Options
Section 8 and Low Rent Housing:
Federal Housing and Urban Development Office (HUD) offers three programs that help renters who are disabled find housing in public or private locations. HUD offers public housing, incentives to private owners, and vouchers for disabled persons able to live independently.
- For information on the HUD site: See Rental Help Pennsylvania
- Federal funds are administered at a county level through a Public Housing Authority (PHA). PHA Contacts
- Additionally, HUD sponsors housing counseling agencies throughout the country that can provide advice on renting and credit matters. See Pennsylvania Housing Counseling Agencies (Also call toll free 1-800-569-4287)
Families living with a person with disabilities and that are income eligible may also participate in all aspects of HUD’s housing choice voucher program. Federally funded housing projects for independent low-income and disabled individuals to purchase are available in every community.
Acknowledgement: The sections on Planning Considerations and Housing Settings are reprinted here with the permission of the Bureau of Autism Services from their recent publication, Housing Options for Adults with Autism Spectrum Disorder, prepared by Diana T. Myers and Associates, Inc. The Life and Daily Living Skills are reprinted here with the permission of the Organization for Autism Research, from their publication, Life Journey Through Autism: A Guide for Transition to Adulthood. These excellent resources are available for download at the Bureau of Autism Services websiteand the OAR website.