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