Why is it we spend the least amount of attention on the longest part of our life?

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An article posted By Mark Roth / Pittsburgh Post-Gazette titled Autism Society of America conference ends with focus on adults with autism and it caught my attention, made me a bit angry and if you are the parent of an adult child with a developmental disability, you may want to pull your head from the sand and take note.

Read more: http://www.post-gazette.com/stories/news/health/autism-society-of-america-conference-ends-with-focus-on-adults-with-autism-695387/#ixzz2Z7gEdyPG

The following are some excerpts from the article:
• In Pennsylvania alone, a state census estimates there will be 20,000 adults living with autism by 2020, and as many families already have discovered, the number and range of services available for adults is much less than for children.• Besides the growing number of young adults with autism who are aging out of the school system, where they can remain until age 21, there are also an unknown number of older citizens who have been living with autism for years without ever getting a diagnosis.
• Thomas Insel, director of the National Institute of Mental Health, who spoke at the conference on Thursday, agreed that the problems of adults with autism get far too little attention.

According to the National Down Syndrome Society (NDSS) the following facts are noted:

o Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
o There are more than 400,000 people living with Down syndrome in the United States.
o Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.

I found this on Autistic World’s website it reinforces the above with the following points:
In the next 15 years, an estimated 500,000 autistic children will cross a major hurdle and graduate out of school systems in the U.S.• Sadly, this won’t bring the gold medal reward most parents of autistic children hope for. Instead, the accomplishment will bring these families to the start of a new obstacle course that may prove more challenging than the one they just worked their way through.
• What happens when kids become adults and age-out of the education system?
• Programs for adults with autism are scarce, and funding for adult services is even harder to find.
• There are currently only about 3,500 programs nationwide for autistic adults compared with 14,400 for children. Many of the adult programs are only day-care type settings that don’t allow the individuals to grow and contribute to society.
• According to one study, only 20 percent of autistic adults in the U.S. are employed, and at least 60 percent of those are believed to be underemployed or paid below market wages.

This was found in a Study done by MetLife on the subject of “Care giving” from the perspective of Adult sons and daughters caring for their aging parents but I think the following ‘Key Finding’ also describes parents caring for Adult special needs children.
The total estimated aggregate lost wages, pension, and Social Security benefits of these caregivers of parents are nearly $3 trillion.

Considering the economy as it has been since 2008 and those that preach ‘Financial Planning’ the first question that comes to my mind is “on top of trying to prepare for retirement for myself and my wife, how can we possibly save enough to care for our children if they out live us?” The average annual cost of care for an adult with a developmental disability is $30,000 to $50,000 depending on the specific needs of the individual. How do you ‘plan’ for that? My wife and I have twins boys, both born with Down syndrome and both Autistic, not only are we faced with double the costs but our next concern is to keep our sons together . . . . Forever!!

Next, the National Down Syndrome Congress (NDSC) is holding its annual conference here in beautiful Denver Colorado this coming weekend July 20 – 21; during the 2 days 68 workshops will be conducted and of the 68, 19 involve the subject of ‘Adult living in some manner’. Here is a list of workshops that are redundant yet given by different individual(s), one class is repeated and not included in this summary:
• 4 Financial Planning
• 3 Work / Employment
• 2 Adult Relationships
• 2 College / Higher Education
• 2 Independent Living, one of these workshops is given by a financial planner and his workshop simply gives him additional time to promote his ideas and services.
• 32% of the workshops offered are geared towards adults however 14 are redundant in that they deal with the same subject matter from a different point of view or service provider. Let’s not forget, some of these presenters are providing workshops in hopes of persuading you to buy their services. I’m not knocking it, everybody has to make a buck and with 4 financial planning workshops, you can see where the emphasis adulthood is.

Here’s my point, we go from birth to 18 in 18 years, the rest of our life is spent in ‘adulthood’ so why does the part of life that we spend the most time in receive the least amount of attention? One parent described developmentally disabled adults as “Forgotten”.

This article was posted on Disability Scoop’s website in February 2012:

Study: Many Adults With Disabilities Do Nothing All Day http://www.disabilityscoop.com/2012/02/15/study-adults-do-nothing/14994/

God will pass judgment on those who fail to provide service for the most vulnerable members of society Widows, orphans, and aliens were the most vulnerable members of society and God expects His people to provide them with service.

Enjoy your journey and help those that need help enjoy theirs.


About kellykrei

Husband to Michele Martinson Krei for 34 years and father of 23 year old twin boys, Kyle & Hunter, both endowed with Down syndrome and Autism Spectrum Disorder.
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3 Responses to Why is it we spend the least amount of attention on the longest part of our life?

  1. Kelly, sadly, this is so very true for most adults with disabilities. What I am discovering is that people believe that becoming an adult means that you have the ability to be completely self-directing. They fail to see the barriers that each of us come up against. Most of the time they are busy “treating” what they think they see because they choose not to “ask us” to define what is really there.


  2. Mark Dernell says:

    Great article Kelly. Thanks for doing the research. We had that sinking feeling for a while now. Here we go.


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