Tag Archives: consumer advisory board

Re: The Justice Center for the Protection of People with Special Needs

Governor Cuomo responded to the numerous allegations of  years  of abuse in many of NYS’ housing for people with mental disabilities with the creation of the Center for the Protection of People with Special Needs. As part of his intervention, he eliminated the Commission on Quality of Care and Advocacy. To me, that is akin to throwing out the baby with the bath water. Now, no other than our ‘friend’ OMH will be charged with overseeing those responsibilities and more. See below why I think this new policy is doomed to do nothing meaningful for us.

As you know, according to Cuomo’s statement, with the new regulations

a new level of transparency will be created for non-state operated facilities and programs licensed or certified by the State to serve people with disabilities and special needs.”

There’s a big problem right there in that statement that will leave this new initiative useless for most of us from the get-go.

1. NYS Mental Health Act (Art.31.02a) states that “operating certificate required” and that all providers must have an operating certificate. The only exceptions are for those certified by another agency, guaranteeing in that way that all providers will be certified. This Act is what makes our system a public mental health policy system.

2. The purpose of this certifying requirement, among others, is to:
a) guarantee as much as possible that the quality of services for which the government is paying to non-profits is not only adequate, but that no harm will be caused in the delivery of such services. b) that the state (OMH) will have legal access in those facilities where  people have complain about abuses.

3. OMH has engaged in a policy of de-certifying most programs since at least the 1990s. You can see, and count for yourself, how at least half of all programs are not licensed or certified by OMH. See  NYS Consolidated Budget and Claiming Manual, Appendix F – OMH Programs Types, Definitions and Codes.

4. Among those programs uncertified by OMH are precisely those which caused this new batch of revisions to our laws to protect people with disabilities.

5. OMH has a horrible legal record of siding with providers being accused of mistreating and abusing the people they were charged to care for and protect. Two of the most glaring examples are the recent Hirschfel v Teller (2010) and DIA v NY Coalition for Quality Assisted Living, Inc. (decided April 2012).

6. OMH’s contracts with providers enables them to be abusers, or so it seems. See  Certification of Compliance For Contractors of Non-Licensed Programs Exhibit A, where the last paragraph states that :

To the extend that a material issue may exist, OMH has determined that the best  interests of the users of the program will be served by continuing the Agreement  while providing the Contractor with an opportunity to develop and/or implement  a corrective action plan.

Evidently, these “contractors” do not implement any “corrective” actions and every 20 years or so the State has to tear down its system and build a new one in order to correct the ineptitude of some providers. Meanwhile, we suffer in our bodies and minds the corrosive consequences of a job badly done by these providers.

As long as those two conditions exist, OMH’s dismal legal record at protecting us and OMH’s policy of de-certifying providers, there will be no ‘center for justice’ on earth capable of enacting a program of legal protection for people like me.

These are some of the recommendations the Citywide Mental Health Project proposes:

1. If there is going to be a revamp of our legal mechanism to protect people with disabilities, that revamping will come out empty if OMH’s policies are not reviewed too.

2. The State must enforce it’s policy that “operating certificate required”. OMH must re-certify all those programs now out of our public system.

3. The new Center for Justice must include all providers, make it clear that the laws apply to all providers without exceptions. Eliminate the “certified or licensed” requirement.

4. Most meaningful for us, there must be a mechanism for consumers at the point of service, meaning at the program facilities, for us to exercise our right to have a say in program’s policies. This comes as part of McKinney´s and even OMH’s regulations. But OMH refuses to implement this requirement.

5. The mechanism is there: the Consumer Advisory Board (CAB). The Citywide Mental Health Project is focusing on this CAB as our tool to have a say in the programs. We can use it to train ourselves to  provide some of the monitoring and oversight that OMH is not providing,  and devise meaningful grievance procedures. This could even save money to the state.

Consumers need to be more forceful in this discussion. Sitting to wait for the day when the system will stop hurting us is not a good approach.

Outline of the origins of the mental health Consumer Advisory Board

This is how I understand the historical development of the consumer advisory board (CAB):

Two events mark the origin and background of CAB:
a) the beginnings of our Federal public mental health policy system (‘mhp’ from here on) and
b) the Willowbrook Consent Decree.

Part I:
A: Beginnings of Federal Public Mental Health Policy System
1) No FEDERAL mental health policy existed before the 1960s because:
a) States controlled mental health services up to that time and
1.  their focus was on funding psych hospitals as the only place for treating the mentally ill.
2. support was for the  psychiatric profession only.
b) because Americans distrusted the federal gov dictating the states what to do. Sounds familiar?

2)  Pres. Kennedy credited with initiating the Fed mental health policy system.
a) started with address to Congress Feb 5, 1963.
b) the process he used was typical of the policy making
process: he ordered a study/research about the situation of the mentally ill in the nation, created a committee to advice him on solution, and presented to Congress his decision on how to try to solve the problem.
c) his focus was on:
1- De-institutionalization of psychiatric in-patients
2- moving them and services for them to the community
3- Prevention
4- assigning funds for those services. By assigning funds, he committed the government to his plan to solving the problem of mental illness.

That same year (1963) Congress passed his Community Mental Health Act: In that way started the federal public mental health policy.

3) His policy consisted in:
a) offering money to the states to participate in his policy, but the money came with a catch:
b) in exchange for the money, States must create an Advisory Council that would:
1. advice the states on what services the mentally ill needed and
2. include protection and advocacy as part of services.
3. be composed of, among others, consumer reps. This is the first federally mandated state mental health advisory council.

In this way WE got into the newly formed Fed mental health policy system.

4) Nine years later came the Willowbrook court case (1972). The
Consent Decree (agreement) stated:
1. This Board [CAB] shall participate in the development of Willowbrook’s philosophy, goals and long term plans, advice the director on a regular basis…”
2. Membership shall include…residents or former residents.”

This CAB was not a mandate to other institutions but served as a model to our nation’s efforts to recover from the haunting history of state-run houses of horror for the mentally ill.

These two events (fed mental health policy and Willowbrook) show how:
a) WE were called to participate at both levels of the nation’s new public mental health policy system: at the state and at the facility (program) levels.
b) the background behind the push to create CAB was:
1. Abuses at state’s facilities (policy of states’ ignoring the abuses).
2. Creation of fed mhp as a response to those abuses.
3. A recognition (implied in the laws) that without PARTICIPATION, the mentally ill were doomed to be oppressed by the same mental health institutions/facilities created to serve them.

This new federal policy and CAB were created for US, NOT for the PROVIDERS. There is no language there referring to CAB as an ‘ancillary’ organism in the policy system; CAB is an INTEGRAL PART of our mental health policy because it was meant to be used by us to coordinate with the providers the program’s policies to prevent abuses of power by providers (private and government).

This promise of participation of the mentally ill in the mental health system continued with almost the same language, with all the other Congressional acts that followed Kennedy’s and Willowbrook. For example:

1- McKinney Act: [July 22, 1987]

-Section 11386: “BY REGULATION each provider must provide PARTICIPATION  of…homeless or former homeless…INCLUDING on the BOARD OF DIRECTORS or other EQUIVALENT POLICY MAKING entity of the  PROVIDER…[no money to the provider] “unless provider agrees – to involve the individuals and families THROUGH  employment or volunteer services in the CONSTRUCTING,          MAINTAINING and OPERATING THE PROJECT.”

[How many of you have participated in the “constructing or operating” of your supported housing?]

2- OMH Supported Housing Guidelines (Appendix Goal 4) says that providers must provide us with “formal input into program and policy decisions”.

Thus, de-institutionalization brought the services to the community and we were promised a place at the TABLE! a VOICE in the system to be heard and to make decisions on matters that affects us.

We have even being given the MECHANISM to do that:
a) the state advisory council
b) and the CAB!! But not allowed to use it as intended.

– Willowbrook’s CAB turned into end-of-life decision-making
body for these people. NY State passed this bill:

“authorize the CAB to make end-of-life decisions… [for people] who lack the capacity to make their own health care decisions.” NYS-S3169 Feb 10, 2011

That bill shows how important and the extent to which CAB can be used: Consumers together making important decisions. [We wouldn’t use it to make “end-of-life decisions”, though. We don’t need death panels.] But this mechanism is being hidden from us, maybe because it is too powerful a tool to leave in the hands of the ‘loony’? We can ‘decide’ euthanasia for someone else but not how to devise a grievance procedure for us in our programs?

Part III: Policy systems

Definition of POLICY:
1. An informed CHOICE
a) in response to some problem in the agenda of government or organization.
b) includes all DECISIONS /NON-DECISIONS to do something
about the problem: it‘s a conscious decision. As when the federal and state governments chose to do nothing at the beginning of the AIDS crisis, or how states did nothing to protect those being tortured in psychiatric hospitals up to Willowbrook and even today are examples of policy: doing nothing or policy of inaction.

2. The IMPACTS of those decisions are part of the study of the policy intentions; they are FEEDBACK! Always part of policy analysis because of:
b) CAB are part of that feedback to the policy system’s process. THAT’S WHY WE MUST PARTICIPATE on them.


There are three: Assess, policy development, and assurance. These functions will be used by the City-wide Mental Health Project to assess how CAB in our programs are fulfilling the purpose for which they were created.

Not all of the essential services under each function will be used because we do not have the capacity at this time.

A: Assessments
1. Establish goals to solve problems we identified in prog.
2. Test those solutions
3. Assess the impact
4. Use the results

B: Policy development
5. Inform, educate & EMPOWER our people about the
problems we confront in the program.
6. Mobilize our community/create partnership with
7. Develop/plan intervention strategies and support
for our efforts.

C: Assurance
8. Enforce laws and regulations
9. Link people to services needed/GOVERNMENT
10. Evaluate the effect, accessibility and quality of services.

This outline and plans to empower our CAB will be reviewed and further developed through out this month.