Kyle’s Story - The Unique Housing Challenge for People with Down Syndrome and Alzheimer's

Welcome to Accessible Housing Matters!

 

In today’s episode, I welcome Paula Gann

 

Paula Gann became involved in advocating for the planning and delivery of services for Alzheimer’s disease when her daughter, Kyle, who has Down syndrome, at age 45 was diagnosed with the disease. Now Paula knows there is a high co-occurrence of Down syndrome and Alzheimer’s disease, but she was unaware of this when she was given Kyle’s diagnosis. That phone call led Paula on a determined journey to learn about this issue and address the needs of this special population.

 

Besides her lifelong pursuit of a quality life for her daughter, Paula had a career first in magazine publishing and later in nonprofit management. She is applying those skills toward advocating for people with IDD who are at risk of dying from Alzheimer’s disease.

 

Listen to find out more about:

 

[00:01 - 01:21] Opening Segment

I welcome Paula Gann to the Show Bio Mother and advocate An expert in Down Syndrome and Alzheimer’s

 

[01:22 - 12:03] Kyle’s Story

Paula shares about Kyle: Same kid, Same problems but different words Public Law 94142: free and equal education for people with intellectual disabilities The Lanterman Act A Very Independent Woman: Kyle’s Experience with Schooling and Adulthood The City of Santa Clara: A city influenced by parent advocates for people with IDD Alzheimer’s for people with Down Syndrome isn’t the same How Paula broke the news of Alzheimer’s to Kyle

 

[12:04 - 27:32] The Unique Housing Challenge for People with Down Syndrome and Alzheimer’s

Dementia Capable Services and Housing She doesn't know what she knows and what she doesn't know Taking care of someone with Down Syndrome and Alzheimer’s “Kyle would be better off with peers.”  A place that would always cater to their changing needs Finding the right and professional staffing for their housing Noah Homes, San Diego; Paula talks about what she wants for Kyle Money in the Aging “The Department of Developmental Disabilities does not keep track of people with Downs.” Getting the word out for families to know

 

[27:33 - 30:01] Closing Segment

See links below to know more about Paula Gann Final word

 

Resources Mentioned:

National Task Force on Down Syndrome

 

Tweetable Quote/s:

 

“You have to go out and find the program for your kids because nobody comes to you and says "This is the program”.” - Paula Gann

 

“It's hard work, you know, working with somebody that has both Alzheimer's and Down Syndrome.” - Paula Gann

 

“What I want for Kyle is, I want a place that she can go to, that will have trained staff that she can have a good quality of life, she can do is whatever she can do for as long as she can do it.” - Paula Gann

 

You can connect with Paula through [email protected].  Visit Down Syndrome Connection of the Bay Area and Noah Homes.  

To learn more, share feedback, or share guest ideas, please visit our website, or contact us on Facebook and Twitter. 

 

Like what you've heard?  Please review us! That helps let other people know about the podcast.

 

Accessible Housing Matters is dedicated to raising awareness about important issues around accessibility and housing, and getting conversations going. I'd love to learn more about what's on your mind, and get your feedback about the show. Contact me directly at [email protected] to share your thoughts or arrange a call.