Building Systems so that Money Follows the Person
March 1 - 3, 2004; Baltimore, MD

Sylvia Caras, PhD

Speaker presentations will be available online after March 15 at

850 registered, and still a waiting list, for this CMS sponsored conference. Wheelchair users, service dogs, blind presenter, ... a visible consumer presence. The conference agenda/handout binder is 3.5" and very heavy. As well, there are state and vendor displays with more print material.

Robert Woods Johnson seeded a Cash and Counseling pilot which has grown into CMS and administration endorsement of the idea that independence is enhanced when people with disabilities themselves decide what services enhance their lives and who should provide them.

12 states have Aging and Disability Resource Center (ADRC) grants and there is a Certification for Information and Referral (I&R) Specialist (CIRS), and a sub-specialty of Aging I&R. I think there could be a CIRS in the area of disability. It would be a good job for a pwd, could even be done from home, and I have no idea what group would encourage the certifiers to create this job opportunity. I&R communication skills: contact, clarification, closure. The model of the ADRCs is a single entry point to services, the "no wrong door" philosophy. But there is some tension, pwd don’t won’t to be identified with seniors, dependence, lack of productivity; and seniors don’t want to be associated with disability, social model, don’t identify their needs in that way. Joint housing projects don’t well combine the two different lifestyles. Needed area aging/disability bridges.

Familiar mental health faces/names: Carole Schauer, Peggy Clark, Larry Fricks, Daily DuPre, Anne Marshall, Pamela Trammell, Joe Donovan, Patrick O’Brien (whom I met with Ellie Phillips last month in Des Moines), Richard Ellis, Todd R and Trudy P from OACMHA, ...

The systems the conference is covering include housing, transportation, employment, ... as well as personal care and medical services - human services coordination. Now 62 programs across 8 agencies have transportation programs for seniors, pwd, ..

Lots of dissatisfaction with HUD expressed and the lack of coordination between HUD and CMS. Officials present pledge to take comments back.

Stanton, CMS: common mission to assist pwd to live and work in the community. Quarterly Open Door Forum re Bush budget proposals. Next year’s conference will highlight state presentations on enduring systems change (sustainability). While individual passion of a single individual often begins system change, enduring change takes more, many. ‘05 budget "life accounts." ACT is an example of money following the person. The IMD exclusion is not gong away (but doesn’t apply to people over 64 even in nursing homes so Medicaid money is already being used for them and also Home and Community Based Wavers may be used.). Choice is the first element in quality.

Power, CMHS: SAMHSA vision: a life in the community for everyone. We are prime for systems transformation. SAMHSA’s role in implementation of NFC Report. Collaboration with CMS. Medicaid pays a significant share of costs, 14 billion according to most recent data, more than half of state budgets, the largest source of revenue for community mental health services, and growing. Coordinate so that consumers are treated as whole people, integrated state service plans. Self-determination - only Florida SDC ( I think) now implementing adult mental health self-directed care where participants can freely navigate the road to recovery on personal terms. (In contrast with being managed by someone else’s perspective of their needs.) Consumer and Family Direction Initiative Summit, March 2004, DC to develop self-determination plans. SAMHSA National Agenda for Action to be released soon - science to services, depression screening, ebp, ... . Also state initiatives. Job, home, spirit, relationships. Keep the needs of consumers central. Speak the value of recovery.

Q&A: suicide, older adults, nursing home population; ‘05 SIG grants (State Improvement), ADAPT - legislation for money follows the person? hopefully this session; also MiCassa hearings; how use Independence Plus waivers for mental health - day treatment under 1115 cost offset changed to self-directed rehabilitation.. Also CMS looking at non-budget neutral applications for self-direction, maybe for ‘06 budget.

People are talking about consumer-directed, consumer-operated, consumer-delivered, and peer support. Terms need clarification.