Consumer/Participant Direction

This letter is one of a series providing guidance on the implementation of section 6087 of the Deficit Reduction Act of 2005, Public Law Number 109-171. Effective 1/1/07, Section 6087, (Cash & Counseling), adds subsection 1915(j) to the Social Security Act. States have the option to provide self-directed PAS to beneficiaries, without regard to the Medicaid requirements of comparability or statewideness. A State plan amendment (SPA) pre-print is enclosed to assist you in submitting an amendment.

The MASS C-PASS Marketing & Outreach Subcommittee (M&O) created a Consumer Forum Series to gather information on barriers to self-direction and community integration from a community perspective. Aside from targeting elders, individuals with disabilities and their families, emphasis was placed on targeting traditionally underserved and un-served racial, ethnic, and linguistic minority groups and rural areas. This report is the narrative account and outcomes from nine consumer forums.

This photo essay captures the people behind the design of Oklahoma's Consumer Directed Personal Assistant Supports and Services (CDPASS) design. The Oklahoma Partnership, organized to support Oklahoma's Real Choice System Change and the CDPASS grants. It was also designed to engage Consumer stakeholders in an interactive environment.

The Oklahoma Department of Human Services Aging Service Division presents this documentation of the principles and processes used in supporting its consumer advisory committee for Real Choice System Change grant and CDPASS grant activities. Building and documenting a shared vision of effective public policy funded by public dollars is a fundamental responsibility of grant recipients. This paper helps explain the stakeholder experience and considers ways to create a quality process.

Minnesota, like many states, faces the challenge of limited resources in the face of increasing consumer demand for more consumer control of services. This report includes recommendations for providing choice of case manager, streamlining administration, funding options, standardizing caseload size, regionalizing some county functions, standardizing performance measures across disability groups, and maximizing individualization. Innovations in case management in other states are also presented.

The CPASS Hawaii project identified stakeholders, particularly people with developmental disabilities and their families, willing to participate in collaborative efforts towards systems change. This report will elaborate on the accomplishments of the project related to their 5 goals including barriers and areas of success, as well as further recommendations. Also included are two matrixes summarizing accomplishments and training efforts, a demonstration report and an evaluation summary.

These materials help case managers and stakeholders figure out where to get started. The Case Manager Handbook explains the roles and responsibilities, plus worksheets and evaluations. The Self-Advocate Handbook helps identify goals and create a person centered plan. The Community Support Guide and Orientation Presentation provide an overview of terms and ways to implement personal assistance programs. A one page handout on stakeholder values and vision plus the overview brochure are included.

Otro Puente was a demonstration project conducted as part of the Massachusetts C-PASS grant. The purpose was to prepare, support and empower individuals with developmental disabilities to increase access to and control of Personal Assistance Services and Supports (PASS), and to identify barriers to consumer self-direction. Otro Puente examined the successes and challenges of participants from Latino cultural backgrounds, most were persons with cognitive challenges.

One of two mini-projects aimed at engaging Medicaid-eligible consumers in an experiment with options of self-direction, the purpose of Community Access was to test creative methods that increase the opportunity of children and adults with disabilities to exercise self-determination. The project met the three objectives of supporting at least 12 individuals, develop a community advisor model to identify core competencies, and to identify barriers to full responses for requested services.

This policy development paper was written as part of the C-PASS demonstration project. The paper offers an overview and definition of self-determination plus three overall recommendations that are critical to making self-direction a reality. The challenge of moving self-direction from a relatively small scale to the foundation upon which all services to people with disabilities and older persons are built remains but the MASS-CPASS initiative, along with others, will help create that path.