Housing & Independent Living
Can Persons With FASD Live Independently?
FASD may affect an individual’s ability to live independently throughout their lifetime. Nearly 80% of adults with FASD do not live independently.
Nevertheless, FASD is often an invisible disability. People in the “real world” often cannot see the disability, especially when the person who is affected by prenatal alcohol exposure has a high IQ and verbal skills which mask executive dysfunction and deficits in adaptive functioning. Such persons are often expected to live completely independently once they are out of school, with no support. Unfortunately, they are unsophisticated, naive, and lack “street smarts.”
People with an FASD often find it difficult to access financial benefits. Many States base eligibility for developmental disabilities benefits on IQ. Many people with an FASD have normal IQs and do not qualify for these benefits. They may be eligible for Social Security Disability Insurance or Supplemental Security Income from the Federal Government if they can meet the strict definition of disability needed to qualify.
Individuals with an FASD typically lack skills managing money. If they work or get a government benefit, they may receive a paycheck or benefits check and immediately spend it, rather than budgeting for rent and other expenses.
A supportive community is important for everyone, but it is essential for people with an FASD. They need a strong circle of support made up of family members, mentors, social workers, job coaches, and others who understand the realities and limitations of FASD.
Parents or guardians of children with an FASD should start planning early for the transition to adulthood, when eligibility for many services will end. Most adults with an FASD will need more help than others to meet the more routine demands of work and home. Areas where assistance may be important include employment, money management, housing, and social skills. Many require close supervision to help them make day-to-day decisions and stay safe.
Housing is a major issue for persons with an FASD. Homelessness is a major risk. Many adults with FASD alienate their families or friends due to their unpredictable behavior and/or substance abuse problems and cannot seek help from them. Living in shelters, "couch surfing" at friends' homes for a few days at a time, or living on the street is likely to be at best disorienting, and at worst life-threatening to someone affected by FASD. Thus, it is important to integrate housing into any transition, rehabilitation or treatment plan.
For someone affected by FASD, having a consistent, predictable and calm environment is very important. However, appropriate housing for adults with an FASD is usually hard to find. Families with means sometimes purchase a residence (trailer, condominium, house or duplex) for their FASD-affected child, or pay rent indefinitely on an apartment or a bedroom in someone else's dwelling. Even when the person works and can afford to pay some rent, their ability to live independently is dependent on their parents' (or other person) who act as the "external brain" and reminds the person with FASD to pay the rent on time, pay the utility bills, obey the tenant rules established by the landlord, etc.
Those individuals with FASD who meet certain eligibility criteria may be eligible for Federal housing programs such as public housing, housing vouchers, Section 8 for persons with disabilities, and rural housing programs. States, localities, and nonprofit organizations also may offer housing, but their eligibility criteria and accessibility vary widely. Supportive housing that offers help with tasks such as cleaning, grocery shopping, and bill paying would be ideal, but few programs are designed for people with an FASD.
For people affected by FASD, supportive living of some kind is needed, including round-the-clock support from people knowledgeable with FASD. They should provide support in money management, cooking and food security, health, medication, housekeeping, transportation, and home maintenance and safety.
Group homes tailored to persons with FASD do not currently exist. Group homes for individuals with mental retardation or mental illness may be an option, but they can be a poor fit for people with an FASD, who may function at a higher level than their housemates or have different needs. Independent living with services may work for persons who do not need constant supervision.
For the person with an FASD and substance abuse problems, finding appropriate housing becomes even more difficult. Some can return home, but others need help finding a safe, supportive environment. Housing is essential to be able to do any further programming around, for example, addiction or employment. If housing is unstable, all other programming will break down.
In some cases, if supervision can be provided, a “sober living house” may be an option. Sober living houses are alcohol and drug free residences for individuals attempting to establish or maintain recovery. Sober living houses have been used as aftercare placements for clients completing residential treatment, places for clients to live while attending outpatient treatment, or as standalone approaches for substance misuse problems. However, a "zero tolerance" policy (particularly around substance use) does not work for people affected by FASD – guidelines should be individualized to each resident.
- Consulting a lawyer about designating a “representative payee” can help parents ensure that their disabled child does not become penniless. The payee can be a family member, case manager, or other person who receives an individual’s checks, pays their expenses, and provides spending money on a daily or weekly basis.
- Help your child live independently. Life coaches, mentors, partners or roommates can all help your child achieve more independence when he’s ready.
- Explore possible living arrangements with your child. There is a range of choices: living at home or with a partner or spouse; living with a roommate or more formal assisted living situations; treatment facilities or even independent living. Experiment and find out which works best.
- Expect your child to become independent later than most. If possible, plan to have your child live at home until her late 20s or mid-30s.
Orchids FASD Services
Report on Supported Residential Services For Adults with Fetal Alcohol Spectrum Disorder For Northeast Persons with Developmental Disabilities
Report on Supportive Housing Opportunities for Adults with FASD
FASD Communities. (A nonprofit organization based in Honolulu, HI. Its mission is "To create sustainable living communities across the United States for young adults with Fetal Alcohol Spectrum Disorders (FASD) that will give them the support they need to become contributing members of society.”) To become part of the FASD Communities planning group, contact Gigi Davidson.
Adaptive Aids for Persons with FASD