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Individuals on the autism spectrum are entitled to supports and services under IDEA from age 3 to 21, but once an individual reaches adulthood and “the school bus stops coming home,” these entitlements become services that are only offered based on an individual’s eligibility and the availability of these services.1 Moreover, the dramatic increase of individuals with developmental disabilities entering adulthood has resulted in limited availability for community housing across the United States. It is estimated that 500,000 teens and young adults with autism spectrum disorder (ASD) will enter into adulthood in the next decade.2 According to Advancing Futures for Adults with Autism (AFAA), the prospects of adults “with autism to become employed and engaged citizens of the U.S. is not so much limited by their disability itself but, rather, by the failures of the system charged with supporting them.”3 To back these claims, AFAA cites a study that conducted an online survey of 200 families of transition-age and adult students with ASD in southern Florida and found that “67% of families surveyed had no knowledge of available transition programs and settings,” and also discovered that “83% relied on family members as their primary source of transition planning assistance.”4 In 2010, the average time spent on the waiting list for home and community-based services (HCBS) ranged from 6 months for mental health waivers to 36 months for mental retardation/developmental disabilities (MR/DD) waivers.5 However, the news isn’t all bleak, as the Federal government announced in 2011 that the U.S. Department of Health & Human Services (HHS) has proposed rules to make a potential $3.7 billion accessible to all qualified states. The policy would provide funding for long-term services and supports through the Community First Choice Option program, which aims “to give states additional resources to make community living a first choice, and leave nursing homes and institutions as a fall-back option.”6 The Money Follows the Person Program is another program that promotes community living for Medicaid-eligible individuals with disabilities. Highlights of the legislation include the option for individuals with disabilities to choose where they want to live, states get the resources necessary to rebalance their service systems to increase the availability of community based services, and the program provides 100% of costs for the first year a person moves from an institutional setting to the community.7
The ability of a person with autism to complete day-to-day tasks with little or no supervision will determine if that individual is ready for independent living or is better suited for community living.8 Like all young adults entering adulthood, some individuals of the young adult population with ASD are ready for independent living and some simply aren’t. Some individuals on the autism spectrum are faced with communicative, social, cognitive, and sensory issues that make living independently without supports or services very difficult, if not impossible. There is no one-size-fits-all approach to housing for individuals on the autism spectrum due to the unique strengths and challenges of each person. This article will highlight the types of independent living and explore the diverse community living environment options, such as supported living, supervised living, group homes, assisted living facilities, and agricultural autism community/farmstead programs.
These individuals who participate in independent living generally live in an apartment or home with few supports. Individuals who choose independent living must be ready for the responsibilities of money management, transportation, safety, grocery shopping, etc.
Adult Foster Care
Individuals live at home with a family that supports the individual in the home. These families are typically awarded government financial assistance and are not necessarily trained or expected to teach independent living skills to the person in their care.9
This type of care involves the individual living at home with a friend or family member. When needed, additional supports generally come in the form of companionship, homemaking-housekeeping, therapy, and health services or personal care.9
There are adult individuals on the autism spectrum who live with their families indefinitely. These families can call on respite services to help alleviate some of the responsibilities and challenges that are a part of having a family member on the autism spectrum. Respite services can help families increase their emotional and social well-being while knowing that their loved one is in good hands.9
Supported living is “based on the philosophy that even though people may have needs specific to their disability, these needs should not interfere with the opportunity for basic life experiences such as physical and social integration, choice, and respect.”10 Individuals who partake in supported living are provided supports based on their needs. These programs “provide residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community.”11 Each living arrangement is person-centered in order for the supports to be effective, helping the individual reach the goal of full membership in the community. A caregiver or support worker will assist the individual with specific areas of self-care or social planning in a supported living environment. Individuals who participate in supported living environments may own or lease their house or apartment, but, may live in the same building or housing complex with others who have similar needs to promote social activity and to allow for greater accessibility for caregivers and support staff. Supported living is ideal for individuals on the autism spectrum that have established independent life, social, and communicative skills, but may require additional assistance from time to time.
Individuals who partake in supervised living are still able to self-own or lease their own apartment or house, but are provided more oversight and services than supported living. Supervised living environments are usually occupied by one or more individuals on the autism spectrum who need assistance with functional life skills.1 Another similarity to supported living is the fact that these apartments/houses can be in the same building or complex of individuals with similar needs to enhance accessibility for support staff. Typically, there is a support staff or caregiver onsite to respond to emergencies and offer assistance based on the individual’s needs.
These facilities provide 24 hour services and support for a number (usually 6 to 8) of individuals with similar disabilities all under one roof.12 These homes are typically owned by a provider agency,1 but are generally located in a residential area and often resemble the average family home. While it is true that many group homes serve individuals with a myriad of disabilities, there are some that cater their services specifically towards individuals on the autism spectrum. Group homes generally work towards a common primary goal which is “to promote increasingly greater levels of independence in the residents.”12 Group homes will assist their occupants with daily living tasks to nurture independence and provide an atmosphere in which they can socialize regularly.
Assisted Living Facilities
Individuals who live in assisted living facilities are afforded the opportunity to have as much independence as they want with the comfort of knowing that personal care and support services are available if needed.13 Personal care services generally include daily living activities such as maintaining hygiene, meal preparation, laundry services, dressing, and more. The fact that these types of facilities do not offer complex medical services distinguishes them apart from nursing/group homes.1 These facilities are operated at the state level, meaning “every state has their own policies that define and regulate what care and services are required for an assisted living community to meet the state standards.” 13 Assisted living programs are ideal for individuals who require help with day-to-day tasks, but don’t necessarily need around-the-clock care.
Agricultural Autism Community/Farmstead Programs
Agricultural autism communities/farmstead programs “generally combine residential living apartments, typically in several single family homes or individual apartments in multi-unit dwellings located on site or in nearby locations, with stable agricultural science and community-based employment.”11 Basically, individuals who live in farm communities occupy nearby housing and are employed on the farm, although some of these communities are residential only. For some, there is a stigma placed on farmstead communities because they may feel these types of communities promote institutionalization and tend to be segregated from the community.14 According to Agricultural Communities for Adults with Autism (ACAA), a national consortium of agricultural based and housing models for adults with autism, “our members, residents, and day program participants are strongly woven into the fabric of their respective communities.”15 Farms and ranches have generally been the typical environment to promote this type of community, but these types of models can be applied in urban settings as well.13 Although these communities have been a great option for many individuals on the autism spectrum, these types of residences tend to offer life-span models, which result in long waiting lists and a low turnover rate. The establishment of new farmstead models across the nation seems to be the only viable solution for those attempting to enroll in these communities.15
The Office of Fair Housing and Equal Opportunity has established federal laws and national policies to ensure that all Americans, regardless of creed, race, sex, national origin, or disability, have an equal opportunity to acquire the housing of their choice.16 Families should consider which type of housing allows the individual with ASD to receive needed supports in an atmosphere that permits him or her to achieve an independent future in a happy and safe environment.
For further information about the different types of housing options in your area please visit the National Autism Network’s Resource Guide.