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.
-term physical and financial security, especially as he or she transitions from adolescence to adulthood.
In California, there are two types of programs so that the individual who needs others to care for or oversee their care has a legally-recognized (and legally binding) relationship with another person who may or may not be a biological or adoptive parents: guardianship and conservatorship. Guardianship is for persons living in California who are under 18; conservatorship is for those 18 and over. These systems have similarities and differences.
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.
Housing for an FASD-Affected Adult With Substance Abuse Issues
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.
How Parents Can Help Their Adult FASD-Affected Child Live as Independently as Possible
- 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.
Managing money can be very confusing for people with FASD.
Money is an abstract concept. That means while you can touch money and hold it in your hand, what money can buy or what money can do are ideas. How much is something really worth? Money and the value of money are hard to understand. $20.00 for a chocolate bar and $20.00 for a pair of new shoes may both seem like good prices to the adult with FASD.
What happens if you don’t pay your phone bill and your phone gets cut off? Why should we try to save money? How do you get out of debt?
Lack of money can lead to poor health, isolation, and dangerous situations for adults with FASD.
- Find a trustee. It’s better if the trustee is not a family member or friend. A trustee can help to manage money before it becomes a problem. The trustee will give the person with FASD small amounts of money and supervise bill paying. There are agencies that act as trustees, call community organizations for ideas or referral to organizations that provide this service. You can also look under lawyers in the phone book for this service.
- If the adult is having trouble spending money wisely, you can help her out in many ways. Do not lend her money. If you do, do not expect to get your money back. You can buy food, a bus pass, or gift certificates for a food store, a haircut, or entertainment services that are in her neighborhood. Never give her cash.
- Do not give expensive gifts. These are often pawned for small amounts of cash and never bought back.
- If she is receiving social assistance it can help is she is designated as a person with a disability. A doctor needs to fill out a form that states that this person has a disability that makes it hard for her to find and keep a job, and that the disability will last for longer than one year. There may also be rental supplements available also.
- Avoid debit cards and personal checks. It is harder to spend money if he has to go to the bank when it is open. If a debit card it used, set up a daily withdrawal limit with the bank. Make a rule that credit cards are not a good choice.
- Teach that gambling does not make you rich, it makes you poorer. Gambling makes the government, casinos and bingo parlors rich. Make a rule that gambling is not a good choice.
- Avoid big phone bills. Set up account restrictions with the phone company, including no long distance calling out and no additional features like caller ID, call waiting, etc.
- Teach an adult with FASD to use a notebook to write down which bills need to be paid and when they need to be paid. This will become his budget book. Teach that bills are paid first. Have him write down everything else that he spends his money on like food, entertainment, clothes, and medicine. Teach him to staple an envelope to the back of the book and keep all receipts. Help him to keep track of where he his spending money.
- Teach him to keep his budget book in the same place all the time. Have a trusted family member, friend or support person check that the bills are getting paid and help with purchasing items.
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.