National Association of Protection and Advocacy Systems (NAPAS): Expanding the World of Advocacy

June 13 - 16, Washington DC

Anecdotal notes:

415 registered including lots of CMHS folks; 122 on presenters list; I only see a handful of familiar consumer/survivor names. I’ve met Pamela Trammell, AL, PAIMI Council Chair; Shirley, TN; Dick, ... Lori Shepherd, CA; Ann Marshall, AL. Gayle Bluebird, FL: Brian Coopper, VA were part of a Dialogues workshop with Carol Schauer and Iris Hyman.

Breakfast with Tom Behrendt; a nice way to start!

NAPAS winter meeting, San Diego, January 7 - 12

Federal appropriations bill won’t even be started ‘til September; probably no federal budget ‘til December.

Karen Armstrong,, is the CMHS PAIMI coordinator has a wealth of data

Protection and Advocacies are part of the disability movement, should be forming coalitions in their states.

Mark Knight, now NAPAS staff, formerly with Ambulatory Behavioral Association, notes that integration of m h with primary care is inevitable.

P&A’s are: client directed, have a legal basis, are designated by the governor, are funded by a formula grant to 57 agencies (some state, some private non-profit) which leads to fiscal stability.

Senator James Jeffords received the NAPAS Congressional Advocacy Award, received a long standing ovation when his party switch was mentioned ("don’t mess with Vermont"), in the 70's was responsible for 504 applying also to federal government, supports the Family Opportunity Act, reauthorizing and fully funding IDEA, ... , is committed to independence, productivity, and inclusion. The award recognizes inclusion, equality, and justice for all. Justin Dart was there and also spoke and sends his love. And I recognized Bob Kafka from ADAPT.

New PAIMI authority expands responsibility to include those residing in the community.

Bernstein: response to individual violence stories, make broader and point out that "what you are seeing is the consequences of broken promises." We are blaming the individual for the consequences of neglect. Spotlight how people are punished by the systems of neglect --

individual is accused of lacking in insight. We are compensating for a bad system by going to the courts and ordering people to comply with that bad system. NY Judge: Unless we tell the public that people with mental illness are violent, there will be no congressional interesting in funding m h. Bazelon is looking at employment. Bazelon is developing a model law for entitlement to voluntary services in the community. Coercion has infected the whole community: one community has driver’s license for people with psychiatric disabilities contingent on medication compliance.

About 50 attended the business meeting which made some by-laws revisions and held elections. The 17 NAPAS staff were introduced.

Accessing Democracy

Federal Partners:

Swenson, Developmental Disabilities: When she hears complaints from people who didn’t get what they wanted from their P&A: "Have you considered advocating for more resources for your P&A?" Olmstead gives us tools; we need to figure out what services will be useful. Placement language is old language; community living is about consumer-direction, belonging; conflict resolution (and dialogues S.) This is nothing less than remaking the face of American democracy.

Arons, CMHS: National strategy for suicide prevention ; manual on restraint and seclusion which focuses on alternatives - restrain often triggers memories of trauma, esp sexual abuse and the manual will suggest how to de-escalate situations. Discrimination and stigma largely grow out of ignorance.

Ashby, Rehabilitation Services Administration (RSA): now promoting integrated employment (no longer extended employment as an outcome), at or above minimum wage in integrated settings; tele-work fund; promoting self-employment; Olmstead TA from TIRR; national employment summit in October (with CMHS).

Civil Rights

Yoemans, Department of Justice (DOJ) Civil Rights Division: 508 - all new federal technology must be accessible; ADA enforcement is at the heart of the New Freedom Initiative (NFI); Garrett is really narrower than generally understood.

Frohboese, Health and Human Services (HHS) Office for Civil Rights OCR): investigates ADA Title II complaints; administration is committed to full inclusion of pwd in community life; NFI not just rhetoric; Olmstead implementation executive order might be out next week; Thomson has made NFI a priority ($50K planning grants to states, consumers must be included); Centers for Medicare and Medicaid (HCFA’s new name?); Thomson: intra- and inter- departmental cooperation and collaboration as well as with the public.


Feldblum, Georgetown Law: disability inclusion is a civil right, not charity; society must modify the hindrances; employment - incentive for employers: quotas or attitude change or taxes leading to fund for accommodations (or credits)?; two Supreme Court ADA cases coming up

Oversight of Developmental Disability programs: Monitoring Technical Assistance Review Systems (MTARS) - review will ask: are the programs doing what is required by law? making a difference? what TA is needed? The National Council on Disability (NCD) will distribute the national MTARS report which will include a summary of non-compliance and actions take. PAIMI does have the resources to coordinate their reviews with MTARS.

Shortage of community-based direct support providers:

Shift Medicare policy from its current institutional bias to a bias towards home and community-based supports (HCBS), and a need to justify paying an institution.

American Network of Community Options and Resources (ANCOR) - provider network

Fair Labor Standards Act, a federal law, considers, and therefore doesn’t cover, home health aides, which it construes like baby-sitters as companions, and not entitled to minimum wage. Some states override and offer protections.

Workforce crisis: "Current difficulties in assuring adequate direct support staff recruitment, retention, and competence are widely reported as the single biggest barrier to the growth, sustainability and quality of community services for people with ... disabilities." "With Olmstead, pending lawsuits, increasing HCBS demand, and person-centered approach, there could not be a more pressing urgency."

Call to action for a national public/private campaign. Building coalitions, involving all stakeholders, building public (taxpayer) support, taking risks, sharing information/skills/resources. "All politics are local." (O’Neill) "Before a legislator learns to vote he/she learns to count." (Weicker)

Mental health planning and advisory councils:

NAMI (and others) wanted accountability for the block grant moneys and 99660 created the councils and mandated who had to be at the table. Councils are to plan, advocate, and review/evaluate/monitor the adequacy of state m h services. (Doesn’t limit to publicly funded.) Few states perform the third charge.

National Association of M H Planning and Advisory Councils Councils have no legislative power, but can have influence, work cooperatively, cross-pollinate with the P&A and the PAIMI council.

CO planning council works with their m h department to write the state m h strategic plan and then the council members lobby the legislature to fund the plan. Successfully. Planning council meets monthly; committees meet in between. Serious time commitment for members.


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