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Life as an adult with disability: results of the Easter Seals study

Walking, seeing, hearing, speaking. These are things we do every day without even thinking. These are things that we take for granted. But there are people out there for whom taking a short flight of stairs can be equivalent to climbing Mt Everest, for whom seeing a flower or hearing a bird song or reciting a nursery rhyme may be luxuries they’ll never enjoy. But even those whose disabilities allow them to walk, see, talk and hear may still have problems living a “normal” life as we know it. Education, employment, financial independence are just a few of the hurdles these people have to face. These are problems that do not only concern the people with disability themselves but their families as well. Parents are especially concerned what happens to their children when they reach adulthood, when the parents are not around to advocate for them.

This is where Easter Seals come in. Easter Seals is “a leading non-profit provider of services for individuals with autism, developmental disabilities, physical disabilities and other special needs.”

Easter Seals has conducted the Living with Disability study which compared the challenges facing adults with developmental disabilities and parents of adult children with disabilities, as compared to parents of adult children without disabilities. The study was conducted in August to September 2010 and surveyed 1,714 adults in 3 categories: 390 adults living with a developmental disability, 318 parents of adult children who have developmental disabilities, and 1,006 parents of adult children without disabilities.

Here are some of the key findings of the study:

• Finances: Huge gaps exist in parents of adults with disabilities’ assessment of their child’s ability to manage their own finances (34% vs. 82% parents of adults without disabilities) and have the life skills necessary to live independently (30% vs. 83% parents of adults without disabilities). Seventy-four percent of parents don’t see their adult child with a disability as financially independent; while more than half (52%) of parents say their adult children without disabilities are financially independent.
• Quality of life: Just 6 in 10 parents of adult children with a disability rate their child’s quality of life as excellent or good (61%), compared to 8 in 10 parents of adults without a disability (82%).
• Employment: Only 11% of parents of adult children with disabilities report their child is employed full time (or 19% part time), while 48% of parents of adults without disabilities report the same (or 24% part time). A little more than a third (39%) of parents say their adult children with disabilities are able to work for pay, compared to nearly all (92%) of parents of adult children without disabilities.
• Independent living: Seven in 10 adults with disabilities (69%) live with their parent(s) or guardian, only 17% live independently – compared to more than half of adult children without disabilities (51%). Furthermore, only 45% of parents strongly agree their adult child with a disability will always have a place to live; whereas, 75% of parents of adult children without a disability strongly agree.

The results of the study will be used to raise public awareness but also give insights to parents of children with disability on how to prepare for their offspring’s future.

Childhood stroke – yes, there is such a thing

Stroke in babies? No. that can’t be. When we think of stroke, we know the risk factors involved: excess weight, bad nutrition, excessive alcohol consumption, lack of exercise, and cigarette smoking. So how can babies suffer from stroke?

Apparently, stroke in children is not that common but not that rare, either. The risk of stroke from birth till the18th year of life is 10.7 per 100,000 children per year.

Last month, the American Heart Association issued a scientific statement on the management of stroke in infants and children.

What are the differences between adult stroke and children stroke?

Type and incidence: In adults in western countries, 80 to 85% of stroke cases are ischemic where it is about 55% in children. The rest are hemorrhagic.

Symptoms: In children, seizure is a common symptom of stroke not observed in adults. About 10% of seizures in full-term babies are due to stroke.

Treatment: It is highly recommended that adults suffering from ischemic stroke be treated with the medication tissue plasminogen activator (t-PA). t-PA is a clot-busting agent that should be administered within 3 hours of the onset of symptoms. This medication is not yet ready for pediatric use and still needs to be tested.

Risk factors: Risk factors for adult stroke are listed above. The most common risk factors for childhood stroke are sickle cell disease, congenital or acquired heart disease, and chronic anemia. Associated conditions include:

• infections including varicella (chicken pox), meningitis, tonsillitis, and otitis media (middle ear infection)
• leukocytosis, and prothrombotic disorders
• systemic conditions such as inflammatory bowel disease and autoimmune disorders
• head trauma
• dehydration.

Sickle cell disease is a risk factor common to both adults and children.

There are also maternal factors that can influence an infant’s risk for stroke and these include a history of maternal infertility, infection in the fluid surrounding the fetus (chorioamnionitis), premature rupture of membranes, and pregnancy-related hypertension (preeclampsia).

Prevention: Primary prevention is highly feasible in adults. Lifestyle change is the main preventive strategy in adult stroke, followed by medication therapy. In children, prevention is to reduce the likelihood of subsequent strokes after the first one has been correctly diagnosed. Primary prevention is only possible when the underlying condition such as sickle cell disease or congenital heart disease is already known. Children with sickle cell disease 221 times more likely to suffer stroke, according to AHA.

The AHA recommendations for the prevention of subsequent stroke in children are as follows:

Children with ischemic stroke who also have migraines may be evaluated for other stroke risks. Common migraine isn’t likely linked to stroke, but migraine with aura seems to increase risk.

It is reasonable to counsel children with stroke and their families about the benefits of a healthy diet, exercise and avoiding tobacco products.

It is reasonable to suggest an alternative to oral contraceptives after a stroke or cerebral venous sinus thrombosis (CVST).

Children with brain hemorrhage not caused by trauma should undergo a thorough risk factor evaluation, including standard cerebral angiography when noninvasive tests have failed to establish a cause to identify treatable risk factors before another hemorrhage occurs.

Parents can get more information about childhood stroke by downloading this AHA brochure Let’s Talk About Children and Stroke.

 

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