It’s that time of the year where parents are shipping their kids off to school. From toddlers who have finally reached school age to young adults taking that next step into adulthood, this season is filled with many new adventures. Many young adults will be leaving home this fall for college and other vocational endeavors. For most young adults, this will be their first time leaving home. This transition may include the full college experience of a dorm room or off-campus housing. Some young adults are also moving to gain more independence which may include moving to the next town over, another county, or just down the street. Young adults with autism are no different. As individuals with autism embrace the transition from adolescence to young adulthood, it is important to be educated on all housing and community living alternatives. Autism is a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior. Though individuals with autism have their deficits, living a life with supports is possible.
Young adults with autism can have the same goals as those without when it comes to gaining independence. There are housing options specifically to assist in this transition. Supportive housing is a combination of housing and in-home services, such as education on activities of daily living which is intended as a cost-effective way to help people live a more stable, productive life. Supportive housing is aimed to help those individuals who have complex challenges such as low income and other persistent issues such as mental health and substance abuse. Supportive housing is intended to be a pragmatic solution that helps people have better lives while reducing, to the extent feasible, the overall cost of care.
As early as the age of 14, but not less than the age of 16, individuals on an Individualized Education Plan (IEP) should have transitional plans. This is a plan which identifies what services will be needed for the individual to transfer from adolescence to young adult. There are significant changes that happen when an individual with autism transitions from services provided by their school through the Individual with Disabilities Education Act (IDEA) to adult services. Parents and caregivers are often shocked at the long wait-list for some of the services available.
As with any transition, it is important to include the individual. Person-Centered planning is crucial. This meeting includes the individual and their support system to discuss how the transition will be handled and by whom. This meeting also discusses the individual’s strengths, challenges, needs, and preferences including housing options. Can this individual live on their own? Can this individual maintain their own personal hygiene? How about meal prep and finances? Who will be responsible for medication management, health, and safety?
Home and community-based services (HCBS) provide opportunities for Medicaid beneficiaries to receive services in their own home or community rather than institutions or other isolated settings. These programs serve a variety of targeted population groups such as people with intellectual or developmental disabilities, physical disabilities, and/or mental illnesses. Parents and caregivers can access this application through the Agency for Persons with Disabilities. When planning for residential services, it is crucial to identify whether it is better to own or rent, what utilities would be needed, and if a roommate is financially required. Another important item to consider is how much will support and services be needed for this individual? Will this individual need around the clock care or low-level supervision?
Supported Living – Supported Living is where an individual lives on their own or with another roommate in a home or apartment but is supported by paid staff. This home or apartment is owned by a family member. Staff are available 24 hours a day, but they do not live in the house with the individual. The individual with autism may go to a day training center or sheltered workshop, work a part-time job, or be in the community with staff assistance. The staff’s primary job is to coach and train the individual in life skill tasks such as banking, paying bills on time, food shopping, etc. Other job duties include assisting with making doctors’ appointments for optimal care, medication management, and ensuring the home is monitored for health and safety. Staff drive the individuals in their own personal cars or company cars/van. The Supported Living staff sees these individuals on a weekly basis and make monthly contact with all supports. Staff also educate the individuals on their rights.
Group Home – A Group home is a facility where individuals live all together. Individuals who live in this type of setting are not related to each other, but have similar disabilities. The house is staffed 24 hours a day, 7 days a week. The staff are trained to provide life skills training such as personal hygiene, food prep, and health and safety. Staff are trained in medication management and behavior assistance training, if needed. The individuals who live in this supported and community-based housing attend a day training program and/or in the community with supports. This type of housing in owned by a licensed provider agency. A licensing agent monitors the Medication Administration Record (MAR) as well as the Registered Nurse. The home is required to have residential monthly meetings where the residents communicate what social activities they would like to participate in and how they want their house run. All individuals who live in the home are educated on their rights. A monthly fire drill is conducted in the home. Staff drive the individuals to day programs, doctors’ appointments, and other social gatherings. Staff drive the individuals in the group home van or the miniature school bus.
An Intermediate Care Facility – An Intermediate Care Facility is similar to a group home. However, this facility is surrounded by similar facilities. This is also known as a “Cluster” on campus which houses individuals with similar disabilities and ages together. Some homes are co-ed. Intermediate Care Facilities has 24-hour nursing, case management as well as behavioral staff if applicable. Intermediate Care Facilities provide transportation to day programs and shelter workshops. The Intermediate Care Facility receives medical care, occupational therapy assessments, and physical therapy assessments. Unless otherwise requested by the family, the Intermediate Care Facility uses one staff doctor who sees all of the residents.
Does my young adult with autism have rights? There are several laws designed to protect individuals with Autism when it comes to fair housing. The Olmsted Community Integration was made in 1999 by the United States Supreme Court. The court stated in Olmsted v. LC that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the American with Disabilities Act. The Court held that public entities must provide community-based services to persons with disabilities when, (1) such services are appropriate; (2) the affected persons do not oppose community- based treatment, and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the need of others who are receiving disability services from the entity.
The Americans with Disabilities Act (ADA) is a federal law that prohibits discrimination against people with disabilities in employment and mandates that these individuals have the right of public accommodations as well as access to programs of public agencies.
The Office of Fair Housing and Equal Opportunity (FHEO) administers and enforces federal laws and establishes policies that make sure all Americans have equal access to the housing of their choice.
When looking for supportive and community housing, it is imperative that families and individuals with autism conduct thorough research. Families should apply for disability services early as there is a long wait and can be cumbersome. When it comes to exploring whether a group home or living with a roommate and minimal staff assistance is best, it is imperative that families tour the group home to get a feel of it. The tour is an opportunity for staff and families to ask and answer questions regarding supportive and community living. Just like a parent releasing a child to school for the first time, you want to be informed and confident in all of your decisions.
Taveesha Guyton, Founder and CEO of We R Famile, is a social worker who works with autistic children and adults. Taveesha Guyton can be contacted at Werfamile.org.
Autism Speaks. Autism Speaks, 2011, https://www.autismspeaks.org/.
Home & Community Based Services. Medicaid.gov, https://www.medicaid.gov/medicaid/hcbs/index.html.
Public Housing Authorities: Helping to End Homelessness through Permanent Supportive Housing. Journal of Housing and Community Development, 2008, p. 18.
Public Housing Authorities: Helping to End Homelessness through Permanent Supportive Housing. Journal of Housing and Community Development, 2008, pp. 18–21.