In March 2011, I was lucky to be among a group of ~30 people who convened in Racine WI to discuss a national agenda for supporting families with a member with intellectual and developmental disabilities. Why? The role of the family is central to individuals with intellectual and developmental disabilities across the lifespan. More so than ever before, the family provides medical, behavioral, financial, and other daily supports — these roles are vital and often policy and practises do not recognize them, support them, fund them, etc. As families become the singular central support unit, policy has to emerge to recognize the validity of their position and families have to become equal partners to the policy dialogue.
I’ve attached the full document from this event. It is worthwhile reading. In particular the statistics are highly relevant and we should really consider how this impacts policy on a go forward basis
- In the US there are more than 4.7 million citizens with intellectual and developmental disabilities.
- More than 75% of those are living in the community without formal disability services, relying on families for various levels of support
- Of the 25% receiving services, over 56% live with their families (in some states that is 80%)
- 28% of children with disabilities live below federal poverty levels (compared to 16% without disabilities)
- Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities
- Over 58% of parents/caregivers spend more than 40 hours a week providing support for their loved ones (beyond typical care) — 40% spend more than 80 hours a week.
- Long waiting lists for services and the increased lifespan of individuals with I/DD have contributed to a growing number of individuals with IDD in households where the primary caregivers are themselves aging.
The systems of old evolved out of an institutional model. The systems of today have to be designed to include a focus on models supporting families through the lifespan of their loved one.
“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society.” The Developmental Disabilities Assistance and Bill of Rights Act, 2000
I encourage you to read the full document and start a conversation: SUPPORTING FAMILIES Wingspread
About half of us were able to make it. Yes, believe it or not what you see here is only half of us! It was a wonderful day, a lovely event and people are talking about it. I hope that when everyone thinks of the day they will remember it as David’s birthday but I think that already the idea that it was David’s birthday is evaporating and people are really remembering it as a family reunion. That key here is that it was a memorable event because it was a family gathering with David included actually at the center of the gathering.
- Back in the day — before mom and dad passed away — everyone used to come “home” for the holidays. Brothers and Sisters and their spouses and their children would come to the house and spend time there. There were so many of us that families would come in rotation. Even still, come they would. Now that our parents have passed away, we don’t have that family “hub” that we used to have. It occurs to me that for the majority of our family we have not seen each other in any major grouping since those days. And they were long ago — before 1994, 1996.
At the beginning of the party we took a moment of silence in quiet contemplation of all those who have passed. Our parents. Our brothers and sister. Our grandparents, aunts and uncles. Looking around the room the “little ones” who used to sit at the “children’s table” are all grown up with their own little ones. It was shocking to me that we are now the elders!.
My nephew Christopher set up music and a playlist with his iPad. He was the “DJ” for the event. I was standing next to him and he said something like “I dont know anyone here. I’ll bet others don’t. Are you going to get people talking?” And so we began “calling” — getting the little kids to come up and answer questions like who can do spock fingers and other recessive gene traits. More than 50% of the people in the room have light colored eyes. 30% can do a clover leaf tongue. And the blonde spot at the back of the head is more prevalent than most let on.
The best part of the day of course is that David loved every minute of it. He loved being the center of attention!
He loved having people read to him… Several people read David his birthday cards…. He loved being the center of the photos, although his fave is with his girlfriend Gina. Every time David is looking away in the photo, follow his eyes and you can see that they are glued on Gina. He loved dancing with his brothers and sisters (and Gina!)
And he loved the after party. The after dinner.
The night time remembering the party.
Wishing us all many more days like this.
Here’s to David Joseph, Happy Birthday, old man :-).