Autism Self-Advocate Fights for Access to Care

Nathan Young of Fortuna, California who is diagnosed with autism is self-advocating for preventive care within the Redwood Coast Regional Centers catchment area. Humboldt Medical Group originally referred Nathan for an EEG test. Such testing concluded moderate cerebral dysfunctions, and consequently a referral to the University of San Francisco has been made for a potential extended study. Yet the Redwood Coast Regional Center’s director of adult services, Kathleen Kasmire, who is responsible for authorizing accommodation to receive appropriate care said to Nathan by phone that “it’s not like [he is] falling to the ground and seizing”, and that further support for access to care was not granted due to a purported lack of medical necessity. For years Nathan has elected not to drive, citing disorientation, for his and others’ safety, and never imagined he would have independence in that manner. He depends on Supportive Living Services to help with medical appointments and daily living such as grocery shopping. Recently however, in consideration that there may be treatment for the infrequent but potentially dangerous symptoms such as sudden clumsiness or stupor, he has realized that it may be possible.

Dr. Gerald Drucker, PhD, a psychological consultant with RCRC, in speaking to Nathan by email about this issue wrote “I think ruling out seizures or something else neurological [or] of physiological [origin] is important.” Nathan also consulted with the Area One Board of Developmental Disabilities’ director Dawn Morley, who referred to the situation as ‘unprecedented’. She emailed other board directors to see if others with disabilities were having similar obstacles with access to care through Regional Centers of California, especially in rural areas, and found no one else has reported it thus far. It may be the case, they are randomly denying folks as a pattern of practice due to budgets and hoping people are too afraid or unable to fight for their rights, and this in spite to such needs for accommodations which are well established in individual cases such as Nathan’s.

Statistics vary slightly, but approximately 20-40% of individuals with autism develop epilepsy according to Autism Speaks. Some studies conclude that 12% of autistic children have seizures, but by adolescence 26% have a seizure disorder. The prevalence of epilepsy comorbidity with autism, which can contribute to functional and behavioral difficulties, is well established, even sometimes confused with autism sensory processing difficulties in autism. Preventive medicine, by definition, should entail routine screening, but when symptoms exhibited have similarities to those of epilepsy, it’s even more important to determine the real cause. Particularly because treatments for those with epilepsy can sometimes conflict with treatments for those with only autism. In the right to care and treatment, organizations such as the Redwood Coast Regional Center of California  as overseen by the Department of Developmental Disability Services (DDS) is mandated to assist individuals in receiving appropriate care.

Nathan would like to improve his ability to be part of the community. Part of his treatment goals and rights is an optimal outcome as described in Title 17 of the California code of regulations. He says, “It is important to me that if I have seizures, that I be allowed treatment, which can improve my outcome. Yet in a rural area, care can be limited. If seizures are not the problem, I’d then like to look into what can lessen sensory difficulties, with appropriate treatment and so I will advocate to the Regional Center about that too, for myself and others.”

For further information about this story as it updates, please see http://www.autismcandles.com.

Tags: , , ,

No comments yet.

Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: