The Federal Government Needs Your Input on I/DD and Alzheimer’s Disease

The Administration on Intellectual and Developmental Disabilities (AIDD) is seeking input from family members and caregivers of people with intellectual and developmental disabilities (I/DD) who also have Alzheimer’s disease or other forms of dementia.  AIDD wants to learn more about addressing the needs of specific populations disproportionally affected by Alzheimer’s disease, like people with Down syndrome.

If you are a family member of a person with I/DD who also has Alzheimer’s or dementia, AIDD is specifically looking for your experience with the following topics:

  • Accurate and timely diagnosis;
  • Access to care;
  • Education on Alzheimer’s disease for practitioners who do not normally specialize in care for people with Alzheimer’s disease; and
  • Special considerations for these populations.

Responses should go directly to Dr. Mette Pedersen at mette.pedersen@acf.hhs.gov  and  Matthew Janicki at the University of Illinois at Chicago, mjanicki@uic.edu by September 25, 2012.

We at The Arc appreciate your willingness to share your thoughts with AIDD – the more they hear from people directly involved with the care of people with Alzheimer’s and I/DD, the better chance we have at making progress in addressing the needs of people with I/DD.

What Can I Do to Raise Awareness About Intellectual and Developmental Disabilities?

There’s a lot you as an individual can you do to raise awareness about intellectual and developmental disabilities (I/DD) in your community. And, since March is I/DD Awareness Month, that’s the perfect time to do your thing – we encourage you to pick at least one idea from the list below and make that your personal effort to raise I/DD awareness during March.

  • Post this as your status on Facebook at least once during March: March is Developmental Disabilities (I/DD) Awareness Month. Help me celebrate the contributions of all people with I/DD by copying and posting this as your status during March. Get more information about I/DD at www.thearc.org.
  • Tweet this out on Twitter at least once during March: March is Developmental Disabilities Awareness Month. Be aware. Visit www.thearc.org.
  • Write a post for your blog about someone you know with an intellectual or developmental disability and how they have inspired you.
  • Since many people with disabilities rely on publicly funded services to fully participate in their communities, policy makers need to know you are concerned about continuing those services in the face of budget cuts during tough economic times. Contact your legislator today and let them know you expect them to enact public policy to assist people with I/DD.
  • Contact your local chapter of The Arc to volunteer or donate. Local chapters are on the front lines of advocacy efforts and provide the services and supports essential to people with I/DD and their families. Often they are lifelines for struggling families and they need your help to accomplish their goals.
  • Watch movies and TV shows that positively portray actors with disabilities and discuss them with your friends and family. Two actresses with Down syndrome are featured on the hit TV show Glee and were recently awarded The Arc’s Inclusion and Image Award for their positive portrayals.
  • Talk to your employer about their practices for recruiting and hiring people with I/DD. Many employers don’t realize just how much an employee with I/DD can contribute to the workplace. Tell them.
  • Support businesses that employ people with I/DD and make sure they know you noticed.
  • Comment on The Arc’s Facebook page and Twitter profile about what you are doing to raise awareness of I/DD.