Independent Living with Special Needs

mom and dad with kids and dog

Fetal Alcohol Spectrum Disorder

Last month we talked about supported independent living for those adults with an intellectual disability who require minimal support in their daily lives. For the adults who only require a little help, such as managing their finances and maybe a check-in once a day, there are various options available, however, there are many other adults who are unable to live in supported independent or semi-independent living situations.

Many people require enhanced supported independent or supervised independent living – for example, those who are diagnosed with FASD (fetal alcohol spectrum disorder).

FASD occurs when a woman consumes alcohol during pregnancy usually within the early stages while the baby’s brain is still developing, and in most cases, the mother is completely unaware that she is pregnant. The result is that the baby is born with brain cells that are damaged or missing – this damage is irreversible. FASD is a permanent brain-based physical disability.

The Canada FASD Research Network published a fact sheet which states: “Approximately one half of all pregnancies are unintended. The highest rates of unintended pregnancy occur in women aged 15 – 19 years of age, which is also a population at increased risk for binge drinking.” In today’s society consuming alcohol has become a socially acceptable way of relieving stress, yet this practice can result in serious consequences for those infants who are exposed to alcohol in the in blue sweater

We spoke with local business owner Sheryl Over, past chair of FASD Peterborough, whose 21-year-old adoptive son, Quinten, has FASD. Sheryl explained how complicated the housing situation is for people like him. She says, “He, like any other 21-year-old, would like to leave home at some point and become independent of his parents.”

Sheryl went on to explain that, as it is a spectrum disorder, there can be a wide variation of alcohol effects on brain development. Only those with low IQ will receive extra funding for housing. A lot of individuals with FASD have a near normal IQ but their adaptive function, which is the ability to use what they know, is impaired.

An FAS Conference report based on research by Ann Streissguth states: “Only 16% of all the individuals with FASD in this study legally qualify as having mental retardation. This means that 86% of the individuals with FASD have an IQ in the “normal” range and do not qualify for services for developmental disabilities. They nevertheless have impaired mental functioning caused by brain damage that is permanent and incurable. Dependent Living was the situation for about 80% of adults with FASD.”

Individuals with FASD have impaired executive functioning – meaning they have difficulty with judging, planning, impulsivity, and memory. They often don’t make good choices and have difficulty learning from their mistakes. This puts them at risk of being led astray, getting into trouble with the law and of becoming homeless.

Even for those who are eligible for funding, the waiting list is so long it can take years for suitable housing to become available. In Quinten’s case, Sheryl was told the waiting list is approximately 10 years so he probably won’t get independent housing until he’s around thirty years old!

When asked what she hopes to see happen to help these young adults with FASD, Sheryl said, “I would like the government to put more money into assisted housing options, not only for the adults with low intelligence but also for all the other adults who struggle with this disorder. They all need understanding and support to live meaningful lives as contributing members of society.”

By Moira Gale

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