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
Recently (as in earlier today) I was in Detroit for a business meeting. It was an “Envisioning the Future”” summit hosted by ADD. ADD invited the public to participate in it’s strategic planning process. When asked, what should ADD do (vis a vis their strategic plan) the following advice (paraphrased) was given.
The Keys to Success:
1. Dream big. We should never let the mundane realities sidetrack our dreams. We must dream big. Aspire and inspire.
2. Take small actions. If you want to get somewhere, be somebody, do something, your actions must be small and very very focused.
3. Get a win and keep moving. Sure, celebrate your successes but then don’t stop! Build on your successes to gain momentum and this will enable you to eventually accomplish your big dream.
4. Include other people (family, peers, others) in your dream and your actions. Our success (speed of success, ease of success, order of magnitude of success) are correlated to our supports.
FYI, this was advice from successful self advocates.
Wisdom for all of us.
Have a great weekend.
July 22, 2010. I had the opportunity to attend a session “Implications of Behavioral Research for Social Welfare Research and Policy.” It’s one of those weird cosmic events that I started a new “position” seemingly unrelated to my past life and yet one of my first opportunities was a direct link from my work at Bank of America and this new life of Social Welfare. How weird is that? For any of my BAC colleagues out there who work(ed) with me at MIT and the Center for Future Banking, this session demonstrates how the behavioral research from financial services can be directly applied to social welfare programs. Things like “stickiness” associated with loyalty programs could also be associated with social welfare programs. I think you guys should hop on this!
Anyway, for those not in the field of banking, financial services, or economics, there was still some interesting information presented at this session. In particular from guest speaker Cass Sunstein, the OIRA Administrator in the Office of Management and Budget.
Before becoming Administrator, Cass R. Sunstein was the Felix Frankfurter Professor of Law at Harvard Law School. Mr. Sunstein graduated in 1975 from Harvard College and in 1978 from Harvard Law School magna cum laude. After graduation, he clerked for Justice Benjamin Kaplan of the Massachusetts Supreme Judicial Court and Justice Thurgood Marshall of the U.S. Supreme Court, and then he worked as an attorney-advisor in the Office of the Legal Counsel of the U.S. Department of Justice. He was a faculty member at the University of Chicago Law School from 1981 to 2008.
Mr. Sunstein has testified before congressional committees on many subjects, and he has been involved as an advisor in constitution-making and law reform activities in a number of nations. A specialist in administrative law, regulatory policy, and behavioral economics, Mr. Sunstein is author of many articles and a number of books, including After the Rights Revolution (1990), Risk and Reason (2002), Laws of Fear: Beyond the Precautionary Principle (2005), Worst-Case Scenarios (2007), and Nudge: Improving Decisions about Health, Wealth, and Happiness (with Richard H. Thaler, 2008).
Sunstein highlighted a few of the government changes being lead by the current administration. Here’s a taste-tease overview of the changes:
- Defaults. “System” defaults should be set in the benefit of the consumer. For example the Affordable Care Act — the default is opt in for Health Care and must take action to opt out (a reversal)
- Simplification. Federal systems and processes should be simplified so that the target audience has a reasonable chance to fulfill their need through the system/process. For example, Federal Student Aid — highly complex now in simplification (tax data automatically populates FHFSA. SSI using a debit card.
- An attention to how people process information. For example, summary disclosures that are easier to read and comprehend. An expectation that materials are clear, succinct, and conspicuous. Effectively disclosed. For example, OSHA.GOVE — now within weeks of any death, everyone sees it.
- Social Norms. Material incentives matter but people are also influenced by social norms. The government has an obligation to understand those norms and to make decisions based on those as well as the data. For example there is a presidential injunction baring texting by federal employees while driving. Additionally, social influence can be contagious and using social influence for the “good” is a necessary incentive (for example, dealing with obesity)
- Cost/Benefit. The current administration’s decision making will not be based on “dogma, intuition, and anecdotes” but rather in an evidentiary fashion through humanized cost-benefit analysis. All presentations should include an assessment of benefits, uncertainties, and alternatives. Monetary equivalents do not tell us everything we need to know. We have to be aware of the ethics (fairness/equity, impact to future generations, and distributions).
- Open government. Knowledge must be dispersed. “sunlight improves practises, transparency is a powerful disinfectant. Examples: RECALLS.GOV, DATA.GOV, the IT Dashboard.
- In your strategic planning process you should not underestimate the implications of these changes. There are big things happening in DC and this type of change is pervasive. I know the government moves slowly but I can tell you this stuff is moving faster than you’d expect.
- Also related to strategic planning, this is illustrative of how process can be as strategic as product.