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Consumer/Survivor-Operated Self-Help Programs:
A Technical Report

Chapter Four

OVERALL RECOMMENDATIONS

Many of the individual projects offered recommendations on how to improve these efforts. The following represents overall recommendations that were mentioned by the greatest number of sites.

Approximately 70% of the sites indicated that more training and technical assistance would have contributed to increased successes. This training was needed in organization-al development as well as staff development. Participants revealed that they felt hindered by this lack of knowledge and that coordinated, comprehensive approaches to meeting technical assistance needs would have been of benefit.

More than one-third of the projects reported that they needed better preparation and planning prior to starting these initiatives. This includes the development of a clear mission, philosophy, and operational structure before implementation. There was a need for a more "proactive" strategic approach to planning.

About 40% of the sites indicated a need for increased resources to adequately accomplish project activities, as well as firm assurances of continuation funding. Regarding the latter, this was a source of substantial distress for a number of the projects in their last grant years, resulting in distractions from project activities.

Approximately one-third of the projects reported the need for improved cooperation with governmental entities, providers, family members, and advocates. In addition, there was a need for increased cooperation amongst consumers as well.

Approximately one-third of the projects re-ported the need for expanded representation of people of color in consumer/survivor self-help activities. Greater outreach to these communities was cited as a need.

Approximately 40% also indicated the need for more research into consumer/survivor-operated services. This included enhanced research into who is attracted to self-help, as well as rigorous process and outcome evaluations of these ventures.

As a result of the startup delays mentioned earlier, about 20% of the sites suggested that future funding for these initiatives be pro-vided directly to the recipient organization, rather than via State Mental Health Authorities.

The above findings indicate that efforts to develop consumer/survivor-operated services should include adequate technical assistance, strategic planning, funding, and cooperation, with a need to increase participation by people of color. Future research is needed to examine the process as well as the outcomes associated with this model.

It is important to note that since the implementation of these projects, a large number of additional consumer/survivor-operated services have been developed, including: case management, housing, employment assistance, "hi-tech" computer networks, a pharmacy, higher education assistance, commercial enterprises, and many others. Also, these and other initiatives have demonstrated similar findings, including the ability to reach large numbers of diverse individuals. One example is an organization in a southeastern State that provides leadership training and development at annual conferences with over 1,500 consumers/survivors at each gathering.

Finally, in addition to the above project-based recommendations, the following overall recommendations are offered:

• Research. There is a clearly defined need for more rigorous research of consumer/survivor-operated services. Suggested research designs include a multisite, multiyear effort with common data collection and measures. A coordination center should be established to assist with data collection and related technical assistance matters. The determination of the research design and specific measures and methodology to be employed should be directed by consumers/survivors. Consumers/survivors should be meaningfully involved in every stage of this process from conceptualization to data analysis to publication.

Specific outcomes and other measures that could be examined include:

• Cost/benefit analyses;
• Independence (including eliminating people's need for Social Security and welfare benefits);
• The impact of self-help on specific sub-populations (e.g., racial and ethnic minorities and women);
• Recipient satisfaction with services;
• Empowerment; and
• Examining whether these programs serve those whose needs would not otherwise be met.

There is an ongoing need for targeted training and technical assistance in the development of consumer/survivor-operated services. This should be focused on all areas of non-profit organization management, including board development, fiscal management, staff super-vision, conflict resolution, strategic planning, fundraising, managed care, and cultural diversity/competency. Training and technical assistance also needs to be given to States and providers to demonstrate how they can sup-port consumers/survivors developing their own service programs. Efforts to provide training and technical assistance should use continuous quality improvement strategies to adapt the training to the needs of consumer/survivor-operated services.

Financial support for the operation of consumer/survivor-run services should expand and originate from a variety of sources: State governments (possibly through a setaside of block grant funds), managed care organizations, private foundations, and other Federal entities (e.g., CMS, HRSA, NIMH, RSA, SAMHSA). Also, other financing mechanisms, such as fee-for-service and capitation within managed care arrangements, should be explored.

The benefits of consumer/survivor-operated services also need to be marketed. This should be targeted to specific audiences-including funding entities and other policy-determining bodies. This could entail the use of traditional dissemination strategies (e.g., journal articles, conference presentations) as well as other marketing tools (e.g., direct mail, print ads, Internet, and other technologies).

The development of managed care for publicly financed mental health services may drastically alter the landscape for consumer/survivor-operated services. Managed care organizations need to become better educated on these models. There also is the need to integrate consumer/survivor-operated services within man-aged care settings, through the development of:

• Practice guidelines;
• Best practices;
• Staff competency evaluation and credentialing; and
• Staff training curricula.

These should be developed with the direct and meaningful involvement of consumers/survivors. In addition, draft "boilerplate" language needs to be developed for States to insert in bidding and contracting processes which man-date consumer/survivor services in benefit plans and service system designs.

The future of consumer/survivor self-help services appears to be bright. As the benefits of this model-both on individual and systems levels-become better known throughout the Nation, the growth of self-help efforts will hopefully continue, unabated.

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