Independent Choices: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities

June 10 - 12, Washington DC

Basics of self-determination from www.hsri.org

* people decide what *they* want

* there is support to make decisions

* there are real options to choose from

* the process is simple and person-centered

* with control comes responsibility

* an approach, not a model, not a program

The over-arching themes I noted were personal right to fail and groups must work together - develop a common language, develop a common agenda.

About 250 here, by invitation, including Jon Brock, Russell Pierce, Jean Campbell, J Rock Johnson, Don Hruby, Director, Consumer Resources and Outreach Program, IA.. Bernie Arons was at the head table for the opening dinner.

Arkansas Governor Huckabee spoke by video about their program which gives cash benefits to pwd to hire their own helpers, including friends and family members. "Cash and counseling" Medicaid 1115 waiver option for personal assistant dollars - AR, NJ, FL have trials. A seabass dinner was served afterwards, at 7:45.

Monday

Loss of dignity is the biggest loss - the example given was related to nursing homes, but I thought of handcuffs and restraints.

A social value question: paying family members for care services. Currently against the law, written in another era, and defined very narrowly.

Paolo advised this self-determination movement to stay true to its values of respect, dignity, .. - his remarks were short and stirring and I wish I had every word to share here!

Sustainable systems are flexible, diverse, and responsive to feedback.

"You must be the change you want to see." Ghandi

Judi Chamberlin was part of the first panel, emphasized building cross-disability coalitions.

Batavia: consumer direction (autonomy) within consumer choice (of models, ...)

Firman: there also needs to be the right to give up control (which aging might want). In aging, advocacy is from providers, who listen, then give people what the provider thinks is needed.
Need for common language - various constituencies have too many different words for a similar goal which could be achieved if there were some coordination of vocabulary

Claude Allen, Deputy Director, HHS, spoke in place of Thomson. In a video, Tom Harkins said he would reintroduce MiCASSA.

Benjamin: constant battle to defend consumer-direction against other interests like nursing homes.

Conroy: If people gain control, their lives will improve and costs will go down.

Jean Campbell reported on the Well-Being Project, an evaluative instrument, and COSP www.cstprogram.org

Russell and I had a discussion about the concept of independence, both of us preferring mutuality, relationship, inter-dependence.

Www.caregiving.org - international conference on family care.

Flier: "Eldercare, Care for the mentally ill, Care for people with disabilities ... "
People with psychiatric disabilities are badly served by this language with promotes our social inclusion. The conference planners have carved out people with psychiatric disabilities both from personhood (which would include choice and self-determination) and from the disability community. The conference is in the DC area, mid-October, 02. It might be useful to be speakers here, to demonstrate that we are more than the brain-diseased.

Tuesday

Some 70 name tags had not yet been collected when I walked by the registration desk.

Kunkel: quality assurance ignores that autonomy means the freedom to make a mistake; services set up to minimize the role of the consumer and focus on provider oversight and accountability.

Moseley: decision making authority must rest with the consumer.

A woman wearing perfume took the chair beside me. I asked her to sit elsewhere and she sat right behind me. I left that breakout session. There was considerable perfume and lots of smoking in the adjacent patio, a misbehaving sound system, and insufficient space between table for the wheelchairs.

I ran into Judi as I was recovering from the perfume and she succinctly talked about building coalitions outside of mental health, shifting the vocabulary, and adopting the values of consumer choice and self-determination.

During the presentations about the success of the self-determination programs, I saw how services that have improved lives have created advocates for good service models. Two who began as recipients in research projects are now consultants for those no-longer-demonstration programs. One, Doris Dennison, was told that, for her care giver, it is "the easiest for you to wear is sweats and a T shirt." With the choice programs, she hired a care giver who cared how she looked, they shopped for fashionable and becoming clothes.

Halloran: Northern Europe's expectation is that neighbors/community will provide service and generally has full social insurance. Southern Europe doesn't and the expectation is that family will be the service providers. Www.socialeurope.com European Social (Policy) Network

Acknowledgment that after a loved one recovers, moves to independent living, dies, the family care giver has a life change to adjust to - the question was asked about whether any then go into care giving professionally, not for their family.

Next Steps/Future Directions

Jones: federal TA money has dried up; complex pictures - advocates must know intermediate bureaucratic levers (HCFA -> HHS -> OMB -> ...

Crisp: broaden personal care option to eliminate agency requirement

Gianopoulos: Medicare has escaped scrutiny

Heumann: we must be stronger advocates and not just employed by our own organizations; end waiting lists; end restrictions on hours; "collaboration is the name of the game"

Stanton: only talk about what's been vetted, not just HCFA, OMB is a player. (HCFA is up for renaming). SAMHSA might be lead agency in creating National M H Commission.

Tinsman: all disability groups must be united in one goal; legislators must *understand* the program - concrete examples, max two page written briefing

Audience member: attend to 'stakeholders' (pwd) not 'stockholders' (pharma, nursing homes, ...)

Broader Perspective

Coffelt: community imperative: people are entitled to community living, freedom, authority, ...

Hruby: holistic/wellness approach, smoking cessation program, stress management, mediation (he does TM)

Bezanson: pwd are tired of begin the conduit to pass money from federal and state governments to providers

Hannum: OR Nurse Delegation Act is crux of much of home-based care - allows family, others to perform some tasks that were formerly restricted to licensees.

Hamilton: self-determination should be "including m h"

How did ARC do this? Might we invite them to present at a m h conference and ask them to help us encourage self-determination instead of family overrule.

Can we develop a value statement like:

When people can speak for themselves, it is contrary to the values of self-determination and choice for another to speak for them.

We can make this US specific, which might shame groups like Voice or the Retarded and NAMI:

America is about personal choice and independence. When people can speak for themselves, it is contrary to the values of self-determination and choice for another to speak for them.

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