I find most people’s agendas are predictable; big corporations want more profits, politicians want to be reelected, bureaucrats want more job security, professionals want better outcomes, academics want more research, unions want, well, just more. But what do recipients want? Medications without side effects? 24/7 talk therapy? A cure from their illness?
For the past ten years we have asked hundreds of recipients what, in their opinion, are the most important factors for their recovery? What is at the top of their agenda?
When you have to survive on thirteen dollars a day for food, transportation, clothes, shoes, toiletries, etc. – after you paid the rent and utilities, the answer is always the same: “money.” (From this perspective, the 75¢ a day the State plans to cut from SSI recipients’ June 09 COLA, is a lot of money)
But they told us they just don’t want more money from the government, they want to be part of a permanent solution; to acquire work skills, a good job and for the Social Security Administration to stop taking half of their pay (www.ssa.gov). While “money” is everyone’s top priority this year, to folks living on $700/month, money will always be the number one issue, every year.
Recipients also told us that the unresolved issues; “money, emotional health, work skills, physical health,” etc. should be our leaders’ top priorities on their agenda. These issues, they feel, require a greater effort, innovative solutions and more resources.
On the other hand, the recovery factors recipients are “most satisfied” with are their Therapeutic Team; their Psychiatrist, Therapist and Case Manager (Congratulations!). They are also very satisfied with the “accessibility and quality of health care” they receive, food and other basics.
To most recipients, these recovery factors have been achieved. Additional resources are not needed. They feel it is time to move on to those issues (in the middle and right-hand columns of the chart) that have not yet been resolved.
When we probe the reasons why recipients rate the “somewhat satisfied” group of factors (middle column), we gain a fuller understanding of the recipients’ predicament; medications have side-effects, recovery is frustratingly slow, their housing is often in poor and in dangerous neighborhoods, health plans have limits, etc.
“Romance,” while probably not on most Commissioner’s agendas, is felt to be elusive among the women in our studies— an indication of the lack of opportunities for socialization. Sadly, the lack of “privacy” mentioned refers to many of the women’s inpatient experiences.
In the fall of 2008, The Center for Career Freedom initiated a national on-line tracking survey to quantify the inpatient experience of the recipients’ last psychiatric hospitalization. Stories of in-patient abuse, especially among young women, were frequently reported at intake – yet, formal complaints, criminal charges, lawsuits or published studies were rare. These victims were being punished by their own and the system’s silence. The “elephants in this room” are toxic; the failure to report and correct these crimes perpetuates and deepens the tragedy.
After consulting legal counsel, we initiated a three-part data collection strategy; at intake, direct mail and on-line. You can view this survey on our website at www.economicsofrecovery.org/survey.php.
Early results show that over ninety percent of the recipients’ inpatient experience is positive and professional. However, unresolved issues include a lack of privacy, safety and trust. Five to ten percent reported incidents of verbal, physical or sexual abuse.
President Obama’s agenda for persons with disabilities is four-fold: 1) education, 2) equal opportunity (ADA Enforcement), 3) employment 4) independent, community-based living (housing). To achieve these and other goals, he has promised some eight billion dollars for New York’s providers of health care, education, infrastructure and more.
There are restrictions to the money of course; it is not to be used to prop up our dysfunctional system but for “investments in ideas that work over ideology”, “new public-private partnerships to support innovation,” and “system reforms that promote transparency, accountability and reduced waste.”
A recent survey the Center conducted of professional, union and recipient association websites failed to find any mention of “system reform, transparency or accountability goals for 2009.” Maybe it is too soon. However, we did find many statements that promised to “study, plan, collaborate, explore, improve, involve, and focus on”, etc., “in a timely fashion.”
It will be interesting to see how the new administration’s program auditors view our state’s love of vague lexicon – will they bring in for-profit consultants to teach us linear thinking? To teach us how to quantify objectives? Will they help us overcome our fear of responsibility? (hypengyophobia). Didn’t Machiavelli warn that transparency and responsibility could be harmful to one’s career?
President Obama’s objective of investing in education and employment for recipients aligns perfectly with their own objectives to permanently resolve their financial predicament.
Now instead of convening committees to wrangle over which issues to allocate precious time and money, we can move forward rapidly and efficiently because we already know what recipients need.
Sound research marginalizes the political pushing and shifts the focus to the quality of the ideas. A new paradigm emerges; real debates about real solutions. Suggestions based on personal prejudice and guesswork doesn’t survive factual, transparent collaboration. Finally, change we can believe in.
The Center for Career Freedom is located in White Plains, New York and can be reached at (914) 288-9763. Visit us at www.economicsofrecovery.org.
