Contributors to the SANYS Response Made These Points

Assessment

Question #1: Consistent needs assessment tools will be utilized to make determinations about support needs, care plan development and resource allocation. Are you aware of, or currently using, a particular tool that you would recommend? If yes, please describe the scope, benefits and challenges for the identified tool.

Participants in the SANYS forums universally held that accurate and discerning assessments are key to the success of the People First waiver; especially person centered planning, resource allocation, support plans and care coordination. They had suggestions about several particular tools, but, more importantly, they had many recommendations on essential characteristics of the assessment process: transparency, equity, comprehensiveness, responsiveness to change and independence from funders.

Contributors to the SANYS response made these points:

·  Assessments should be done independently of DISCOs and providers. No party with a fiscal stake in the results of the assessment should have influence on it.

·  Assessments must not intimidate, create fear of repercussions or bias in resource allocations.

·  Assessments must be in plain language; they must be culturally sensitive.

·  Assessments should yield more than strict number scoring. They should include narratives that describe the unique characteristics of each person.

·  Assessments should be led by trained persons but must include people who know the individual exceptionally well. Assessments must cover all of the individual’s life and circumstances: home, employment, health, relationships and support, etc.

·  Assessments must identify strengths and needs, but avoid mistaking “successes with supports” to mean that supports are no longer needed.

·  Assessments must be regularly and frequently updated as the circumstances and needs of individuals change. There must be due process safeguards and an appeals process.

·  The quality and reliability of assessments should be evaluated by independent third parties.

·  OPWDD should review the statutory and regulatory criteria for eligibility to be sure that it remains appropriate, particularly regarding individuals with higher IQs, but low adaptive skills (e.g. autism spectrum).

·  Specific assessment tools suggested by SANYS forum participants were: Support Intensity Scale (SIS), Strength based Practice Inventory (SbPI), the Keys to Life assessment protocol used by Rensselaer ARC, the personalized assessment process used by Onondaga Community Living, the work of Beth Mount and John O’Brien, instruments used by the state Office for the Aging, and materials available from the National Resource Center for Participant-Directed Services.

Question #3: Have you used a needs assessment process for the allocation of resources? If yes, please describe your experience from both a benefits and challenges perspective.

SANYS forum participants had little experience with needs assessments that drive allocation of resources as this approach is barely used in NYS. They did, however, discern benefits and challenges to this process. It is SANYS’s position that using needs assessment to determine resources – combined with responsiveness to reasonable interests and wants – is important to New York’s system reform.

If resource allocations stem from needs assessments several aspects are important: 1) reasonable opportunity to adjust resource allocations for atypical or unique individual circumstances (that is, the allocation methodology should not be rigidly formula driven); 2) individuals and providers/supporters must be able to use resources flexibly for support plans that best match needs and interests, especially in self determined and self directed services and supports; and 3) transparency in the allocation process and due process for appeals to neutral third parties.

The following comments reflect the views of the SANYS forums participants:

·  The link between needs assessments and resource allocations must be rational, equitable and transparent. All participants should be able to understand the logic of how needs assessments determine resources.

·  The assessment process must be entirely segregated from any parties with fiscal stake in resource allocation decisions, i.e. the DISCOs and providers.

·  There must be reasonable room for discretion in resource allocations for unique or atypical circumstances in individual cases. Opportunities to reassess needs and make adjustments to resources should be regular and easy to access.

·  There must be substantial choice in the type of services and supports that resources will fund, including the opportunity to custom design self determined or self directed services and supports and true portability of resources.

·  Many individuals do not have strong circles of support or advocates. There should be advocacy on their behalf that exists outside of providers.

·  There must be a responsive appeals process overseen by neutrals that do not have fiscal stake in allocation decisions.

Question #4: Have you had experience with a strength based needs assessment tool that incorporates a review of natural community based supports available to the individual? Please identify a tool that you would recommend.

Most SANYS forums participants felt strongly that New York State makes very little use of tools that incorporate meaningful consideration of natural supports. Enhancing attention to natural supports in each individual’s overall plan of supports would be worthy of pursuing, but natural supports should not be used to duck the system’s responsibility to adequately fund necessary paid supports.

The forum participants had these recommendations to offer:

·  Assessments should address the individual’s natural supports and community integration in concrete ways; this must not be a “lip service” issue.

·  The concepts behind the SANYS “Wheel Power” approach to community life are very powerful and could be incorporated into assessment and planning tools.

·  Person centered planning must give focused attention to natural supports: finding, nurturing and sustaining them. Planning for and achieving community connections is not necessarily an innate skill. Training should be provided to individuals, advocates and staff in community building and forging natural relationships.

·  Quality reviews of assessments (and person centered planning) should look closely at whether natural supports and community relationships are being actively pursued.

·  While natural supports are important to the quality of a person’s life and his/her potential for community integration, they should not be considered as a substitute for paid staff and supports.