New Freedom Commission Subcommittee on Consumer Issues

NAMI SCC Website

Subject: New Freedom Commission Update

Dear colleagues,

The next meeting of the New Freedom Commission is

August 7^th and 8^th, 2002

The public portion of the meeting will be 3-6PM, Aug. 7 and 8:30AM-3:30PM, Aug. 8th.

In order to more efficiently carry out our work we have set up a number of subcommittees (I will send out names of all when I know them). I am the chair of a subcommittee on Consumer Issues which will cover consumer concerns not focused on in the other subcom. such as recovery, the role of consumer-run activities, etc. I am also a member of the Rights and Engagement Subcom. and the Housing Subcom. I am also concerned about there being consumer voice in the other subcom. esp. employment, Medicaid, and cultural competence and will submit suggestions to them.

I am particularly interested in your recommendations as to changes which would help solve these issues (include any changes to federal, state and local laws and regulations you could think of):

1. Consumer Issues Subcommittee (the following issues were identified in our first series of emails and in the testimony presented before the commission. These are issues not covered by other committees)

a. Recovery: what would a truly recovery-oriented mental health system and outside of system approach look like? How to bring about the training needed to shift the culture of care towards recovery? What can we learn about self-directed care from groups outside the mental health system such as people with other disabilities?

b. Consumer-run activities, peer support, and self-help: How can these alternatives to traditional services assist in people's recovery? How can they complement the traditional system? How can they be replicated and financed without loosing their independence and values?

c. Stigma and discrimination: How are they perpetuated? What can be done to reduce them? How to ready communities for people's integration?

d. Consumer driven research and the consumer critique of evidence based practice:

Consumers contribute a unique perspective on issues such as recovery, the effects of coercion, and what constitutes evidence based practice and who defines the evidence etc.

e. Nothing about me without me: How to improve the participation of consumers in the important decisions affecting us at the individual and collective level?

2. Rights and engagement Subcom.:

a. Mandated treatment: What are the pros and cons of the various forms of mandated treatment (mandated means all the ways the system coerces consumers such as through requiring treatment for people to get housing, or to get their social security in addition to the clearer forms such as outpatient commitment or treatment as a condition of probation)?

b. Alternatives to mandated treatment: Are there voluntary services which would reduce the need for mandated services? Are advance directives an alternative?

c. Protection of civil rights of mental health consumers: How can this area be improved?

d. Confidentiality: How can sensitive information about consumers be protected?

Other issues I will push:

3. Housing Subcom.: How to increase the availability of safe, affordable, accessible, permanent homes of one's own which do not require the person to

be in treatment to have a home?

4. Employment: How can more states be induced to adopt the Ticket to Work Legislation with the Medicaid option of extending coverage beyond the time of a person on social security returning to work?

5. Medicaid: How can more states increase the flexibility of the Medicaid funding to cover less traditional care such as consumer-run activities, peer advocates, and consumer satisfaction teams without overly medicalizing these activities?

Presently, in addition to this list, there are the following avenues to making your opinions heard:

1. The commission website: www.mentalhealthcommission.gov contains a feedback form

2. Chairman Hogan and I will hold a special session at Alternatives 2002 in Atlanta, Friday Sept. 20, 8:30-9;45 AM to give an update and receive feedback

3. Public testimony for an hour at the end of each commission meeting

Thanks for your help.

Daniel Fisher, NEC, Lawrence, Mass.

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