An Ignored Generation

When Mom was young, it was rare to know of families with intellectually disabled relatives.  She knew of one family and their relative was kept chained to a toilet.  Such events seem unthinkable today, but they still occur.  If the intellectually disabled were not locked away in the home, they were institutionalized.  In the mid-1960's, the intellectually disabled were widely released from the institutions where they had lived, some for their entire lives.  This movement really was in full swing by the 1970's and the released patients were returned to their families or ended up homeless.

Today, 40 plus years later, the intellectually are rarely institutionalized.  They are encouraged to live independently, in group homes or with their families.  Lyn lives at home with Mom.  While more care has been provided to the intellectually disabled and they are no longer subjected to a program of eugenics, there is still a long way for us to go in properly advocating for their needs and providing them with proper care.

There are pockets of physicians and other care providers who do have a focus on the needs and the differences of the intellectually disabled patient, there is still much to do.  More physicians can address the needs of the cancer patient or the elderly than they can the intellectually disabled.

In the hopes that Mom's experience with the neurologist was not the norm, she approached the mother of another bowler at the Area Games on Saturday.  The bowler is about 15 years older than Lyn and was diagnosed with Alzheimer's Disease three years ago.  She has Downs Syndrome and, of interest, her sibling is a physician at the University of New Mexico Hospital.

Mom asked the other mother which neurologist was treating her daughter.  The answer was that no neurologist was providing care.  In her experience, no neurologist in or around Albuquerque was worth the time because they did not have experience with the intellectually disabled.   Early on-set dementia is well documented for those with Downs Syndrome.  Even with that, even with the research that has been done for the past 10 years or so, there is a lack of knowledge and experience with the very people who should be able to serve as resources.  Because of this, the other mother said that Lyn and her friends are "an ignored generation."  They're no longer institutionalized but they're still marginalized.

This family has decided to focus on maintaining the quality of life for the daughter with Alzheimer's.  Her primary care physician is providing as much care and support as possible.  They are focusing on medications to stabilize her agitation but not introducing medication to try and slow down the progression of the disease.  They are still keeping her active.  For example, she still bowls and competes with the other athletes.

There is hope for the next generation though.  For example, the Kennedy Krieger Institute in Maryland focuses on the specialized needs of children and adolescents with intellectual disabilities, neurological disorder or other challenges.


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