Autism Self-Advocate Fights For, Wins, Access To Care

The unacceptable state of equal access to healthcare for citizens with developmental disabilities

In a time when many are already concerned about the government’s overreaching, most don’t realize how far that reach already goes for individuals with developmental disabilities. Even with the existence of the Americans with Disabilities Act (ADA), and assuming the individuals manage to get approved for health insurance, additional hurdles remain. Nathan Young, a Self-Advocate in Northern California, says of his social media advocacy, “I do not believe the government should tell me when I can and cannot see a doctor. My doctor made a referral to see a specialist, the California Department of Developmental Services should respect that and allow for my human rights.” He goes on to say, “It’s my job as a self-advocate to tell others if I think something is wrong, especially when others may not be able to express their concerns and or be heard.” People with developmental disabilities have protected liberties, including the right to access medical care and to make their own life decisions.

When children with autism or other developmental disabilities age and familial supports fade, how do we assure quality of their care while maximizing their independence? Increasingly, it seems people in these communities face barriers finding the care they need. In rural areas it can be necessary to travel to larger cities to find specialists for some care, but individuals may be denied the support needed to broach the associated complexities of such visits. Some suggest the solution is to move to these cities, but that removes existing day-to-day support from their communities, and would likely increase their dependence on the government.

Community news Lost Coast Outpost reported on an incident which has increased public scrutiny of Redwood Coast Regional Center. An employee of RCRC tried to instruct the owner of a care home for people with developmental disabilities to impose excessively harsh consequences on a resident struggling with alcohol, even suggesting homelessness or arrest as acceptable outcomes. Certainly people can overreact sometimes, but is enough being done to mitigate the effect in the support of individuals with disabilities? Events like these may routinely remain under the radar if not for citizens and support workers, like the care home owner, brave enough to speak up; but even then, does the media share the news? There needs to be more accountability and transparency near the individual level for agencies like these, better reflecting the laws which already exist.

Additionally, consider how people in the autism and developmental disability communities must recognize and petition for aid in additional health problems, and also may need to finance lawyers and doctors themselves in cases where they must appeal denials from the administration. Sometimes it is expected they prove the existence of an issue, when what they’re seeking is the very testing needed to do so, a cruel catch-22. Is the Department of Developmental Services moving below accommodating even preventive care to ‘no care’?

Image courtesy Lisa Croen, Kaiser Permanente Division of Research
Image courtesy Lisa Croen, Kaiser Permanente Division of Research

Many disabilities also carry increased likelihood of additional health impairments, besides the consequent behavioral complications which affect overall health (autism perseveration resulting in self neglect, for example). Autism, Down syndrome and Cerebral Palsy are a few major examples with notably increased comorbidity of other conditions. Yet administrators and sometimes even doctors may neglect these issues as ‘symptoms of the disability’, rather than as distinct, parallel health problems. Go to 

Comorbid Conditions

 for details and updates.

It’s time to start taking all people’s health care seriously!

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