Supported Decision-making Process and Participant Outcomes Evaluation

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The NYS Developmental Disabilities Planning Council has actively explored increasing access to Supported Decision-Making (SDM) in New York State. SDM is an alternative to guardianship whereby a person with an intellectual, developmental, (ID/DD) or other disabilities keeps their legal rights to make decisions and uses designated supporter(s) for decision-making assistance where needed. i

SDM is premised on the belief that with the right supports people with ID/DD can make their own decisions and assume legal obligations, obviating the premise for guardianships.ii SDM empowers individuals, assists them to make their own decisions, and prevents unnecessary infringements on their autonomy. iii Numerous countries and states have undertaken studies to determine how persons with ID/DD and other disabilities engage in SDM, in addition to assessing the longer term impacts of SDM.iv Empirical studies of SDM pilot programs to date have shown promising findings, indicating ways that SDM may positively affect persons with ID/DD’s exercise of their right to make decisions, such as:

Using SDM can strengthen persons with ID/DD’s ability to understand decision-making processes, to make decisions and to implement them;1

SDM may be effectively used by persons with ID/DD to make healthcare and financial decisions, even though these frequently are cited as chief concerns for guardianship petitioners; 2

1 Cahana, T. & Yalon-Chamovitz, S. (2015). Article 12 Supported Decision Making Pilot: Summary of assessment study findings, p. 4. Retrieved from bizchut.org.il/en/wp-content/uploads/2016/03/pilot_report_ENG.docx. 2 Social Policy Research Centre (2017). Evaluation of the Supported Decision Making Phase 2 (SDM2) project: Final report, pp. 3-4. Retrieved from http://apo.org.au/system/files/113076/apo-nid113076-444961.pdf; Pell, E. & Mulkern, V. (2016). Supported Decision Making Pilot: Pilot program evaluation year 2 report, p. 5. Retrieved from https://www.hsri.org/files/uploads/publications/SDM_Pilot_Evaluation_Year_2_Report_HSRI_2016_FINAL.pdf.

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Using SDM may empower persons with ID/DD under guardianship to initiate rights restoration proceedings; 3

SDM may lead to increased confidence in persons with ID/DD’s decision-making abilities, more sophisticated decision-making skills and strategies, and greater autonomy in making certain types of decisions not previously made before;4

SDM’s effectiveness may depend on the availability of natural supporters and the quality of training and ongoing programmatic supports provided to facilitators;5 and

SDM may positively affect supporters’ perception of persons with ID/DD’s decision-making;6 and SDM may reduce the risk of abuse & neglect, while ensuring that supporters respect the will and preferences of persons with ID/DD.7

To promote greater use and awareness of SDM in New York State, in 2016 the New York State Developmental Disabilities Planning Council awarded a five-year grant to a Hunter College-led project in partnership with the New York Alliance for Inclusion and Innovation and The Arc Westchester to:

1. Develop and implement an educational campaign with and for individuals with ID/DD, family members, and other stakeholders to raise awareness of SDM as an alternative to guardianship;

2. Develop and pilot a model that operationalizes SDM for persons with ID/DD either at risk of guardianship or already subject to guardianship orders in New York City, Westchester, and 4 additional geographically diverse sites in New York State;v and

3. Identify strategies for ensuring the long-term sustainability of SDM and encourage systems-level change.

Progress to date on the “Supported Decision-Making New York” or “SDMNY” project is described at length in a law review article.8 In brief, the SDMNY partners have

3 Cahana, T. & Yalon-Chamovitz, S. (2015). Supported Decision Making Pilot: Summary of assessment study findings, p. 5. Retrieved from bizchut.org.il/en/wp-content/uploads/2016/03/pilot_report_ENG.docx; Pell, E. & Mulkern, V. (2016). Supported Decision Making Pilot: Pilot program evaluation year 2 report, p. 40. Retrieved from https://www.hsri.org/files/uploads/publications/SDM_Pilot_Evaluation_Year_2_Report_HSRI_2016_FINAL.pdf. 4 Wallace M. (2012). Evaluation of the SDM Project, pp. 4-5. Retrieved from http://sdmny.org/download/margaret-wallace-evaluation-of-the-sdm-project-2012. 5 Community Matters Pty Ltd (2015). HCSCC Supported Decision Making Program 2014-15: Evaluation report, pp. 5-6. Retrieved from http://www.hcscc.sa.gov.au/wp-content/uploads/2015/11/HCSCC-SDM-Project-2015-Evaluation-Report1.pdf. 6 WestWood Spice (2015). My life, my decision: An independent evaluation of the Supported Decision Making Pilot, p. tbd. Retrieved from https://www.adhc.nsw.gov.au/__data/assets/file/0009/346194/sdm_pilot_project_evaluation_report.pdf. 7 Pell, E. & Mulkern, V. (2016). Supported Decision Making Pilot: Pilot program evaluation year 2 report, p. 5. Retrieved from https://www.hsri.org/files/uploads/publications/SDM_Pilot_Evaluation_Year_2_Report_HSRI_2016_FINAL.pdf. 8 Glen, K.B. (2017). Piloting personhood: Reflections from the first year of a supported decision-making project.

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developed a phased facilitation model whereby trained, volunteer facilitators assist persons with ID/DD, referred to by SDMNY as “decision-makers,” to develop and enter into SDM agreements describing their preferred decision-making support arrangements. This model is used in both SDMNY’s Diversion and Restoration pilot programs, which involve decision-makers at risk of guardianship and subject to guardianship orders, respectively. In addition, SDMNY partners have developed educational materials designed for diverse stakeholder groups, delivered presentations in traditional and virtual formats, and engaged policy-makers and institutions in constructive dialogue around sustainability. To fully understand both the evolution of grant activity design and implementation and longer-term project impacts across stakeholder groups, the DDPC is seeking to establish a two-pronged evaluation project that assesses the SDMNY process, as well as individual outcomes of those who have moved through the program. This independent evaluation will address topics related to the process and impact of SDMNY activities as they effect individuals with ID/DD, family members, decision-making supporters, facilitators, and other groups. These topics may include, but are not limited to:

Challenges and implementation recommendations to inform broader SDM adoption by prospective decision-makers either at risk of guardianship or subject to guardianship orders;

Strategies for strengthening SDM practices (e.g., providing trainings for decision-making supporters, developing peer support opportunities, etc.);

Strategies for improving decision-makers’, supporters’, facilitators’, and third parties’ understanding of their roles and responsibilities in SDM arrangements;

Initial and ongoing inputs required for decision-makers to leverage entered-into SDM agreements to establish an effective SDM practice;

Factors that may increase or decrease the ease of engaging in SDM (e.g., number and availability of supporters, whether supporters are paid professionals or unpaid, socio-economic status, geographic location, types of decisions being made, living arrangements, degree of community inclusion, intensity of support needs, etc.);

Appropriate metrics for determining the success, efficacy, or strength of the SDM model within and outside the context of formal facilitation programs;

Assessing short-term and long-term outcomes of the SDM Diversion and Restoration Pilots on individuals, as well as within the disability field;

How formalizing SDM arrangements into written agreements may affect SDM practice;

How SDM affects the perceptions of supporters and third parties with regard to decision-makers’ ability to make decisions;

Risks and rewards inherent to SDM practice and how decision-makers, supporters, and third parties assess those risks and rewards;

Cardozo Law Review, 39, 495-519. Retrieved from http://sdmny.org/download/piloting-personhood-reflections-first-year-supported-decision-making-project/.

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Practices and programmatic elements that strengthen the SDM model and facilitate the establishment of SDM as a data-informed practice;

Satisfaction data of Decision Makers, Supporters, Decision Assistance, and Roles & Responsibilities; and

Identifying methods that address sustainability and funding through statutory or policy changes and waiver amendments.

The selected grantee will evaluate the process and impact of SDMNY. The evaluation framework will include measures for decision-makers, supporters, facilitators, and other key stakeholders to assess the achievement of project goals and key objectives, in addition to an overall process evaluation. The Anticipated Scope of Work will include:

1. Evaluating the SDMNY facilitation model’s process and impact on individuals, family members, and relevant others;

2. Identifying effective practices, and developing strategies to refine and improve engagement tools used in SDM, to determine the efficacy of the process for establishing SDM, and support stakeholders to understand and engage in the process of SDM; and

3. Identifying strategies for ensuring long-term sustainability of the SDM initiative and utilize SDMNY pilot program participants’ experiences to inform potential changes to Article 17-A guardianship9 and other potential legislation that would further the use of SDM.

Key tasks will include, but are not limited to:

1. Ensuring the meaningful participation of persons with ID/DD in the design and implementation of evaluation activities consistent with community-based participatory research methods;

2. Developing data collection methods and instruments, and establishing data use agreements and coordination plans with SDMNY partners;

3. Obtaining necessary ethical clearances for human subject-based research, collecting data, and completing required data analysis;

4. Developing a Process and Impact Evaluation Report that identifies key lessons learned and measures which can inform SDM policies and replication beyond the conclusion of DDPC-funded grant activities;

5. Sharing and disseminating project findings, resources, and developed tools in accessible formats, including in plain language versions, with diverse stakeholder groups, including policy-makers;

6. Influencing broader systemic change and acceptance of SDM agreements by leveraging the evaluation findings to key stakeholders and policymakers; and

9 New York Unified Court System. (2016, July 15). Guardianship of a person who is intellectually disabled or developmentally disabled. Retrieved from https://www.nycourts.gov/courthelp/Guardianship/17A.shtml.

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7. Identifying opportunities to expand SDM programs and funding through self-directed services, Medicaid waivers, and legislation is critical to sustaining SDM as a viable option for individuals with ID/DD.

The selected grantee will be expected to meet with SDMNY partners and DDPC staff to establish roles and responsibilities and review the full Scope of Work that will be further defined in the Contract.

The key objectives of the Process Evaluation include:

Evaluating the program design by enlisting and engaging key stakeholders who are instrumental in implementing SDMNY activities;

Evaluating the effectiveness of ongoing/proposed program implementation plans including outreach, the SDM educational campaign, and the Diversion and Restoration pilots;

Evaluating the program administration including program management, training, and documentation and reporting; and

Gathering information and analyzing program data; documenting the achievements, challenges and lessons learned; and determining ways in which SDM can be sustained and funded through statutory and policy changes or waiver amendments.

The key objectives of the Impact Evaluation include collecting quantitative and

qualitative information to assess and evaluate previously defined elements including but not limited to:

Whether the SDMNY facilitation model effectively diverts persons with ID/DD at risk of guardianship and prepares those who are subject to guardianship orders to initiate successful rights restoration proceedings;

Whether the SDMNY facilitation model effectively prepares decision-makers for future SDM practice;

How the SDMNY facilitation model affected decision-makers’ relationships with their supporters and how those effects may vary depending on supporter type (e.g., paid vs. unpaid), number, and availability;

How SDM practice may be affected by factors such as number and availability of supporters, socio-economic status, geographic location, types of decisions being made, living arrangements, degree of community inclusion, intensity of support needs, etc.); Whether the SDMNY facilitation model is adaptable to diverse settings and the likelihood of its adoption after the grant award’s conclusion;

How effectively SDMNY educational and awareness-raising activities, including the www.sdmny.org website, affected various stakeholder groups’ understanding and utilization of SDM, including whether they perceive SDM as a

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viable alternative to guardianship and whether they are more or less likely to seek guardianship or rights restoration or to take other steps;

Whether SDMNY sustainability activities achieved necessary buy-in from key institutions and policy-makers;

To what extent the SDMNY facilitation model’s continuation may depend on external factors;

Identifying best practices and factors that can be replicated as models that advance supported decision-making as an alternative to guardianship; and

Assessing efficiency, sustainability, relevance, unintended outcomes, and likely contributing factors.

The successful applicant will develop an evaluation methodology that includes assessment protocols and tools addressing both process questions and impact questions, including but not limited to:

Process Questions may include: How are the SDMNY Diversion and

Restoration pilot programs operating? What are the necessary elements and variables that need to be managed or modified for different stakeholders? How can programs achieve and maintain effective outreach, participant engagement, and high satisfaction levels?

Impact Questions may include: Are the programs accomplishing their intended

results? Does SDM improve the quality of life of participants, by increasing choice and full participation in their community? Does SDM positively affect participants’ perceptions of how persons with ID/DD engage in decision-making?

The successful applicant’s methodology, where appropriate, will be designed so that findings are relatable to findings made in evaluations of other salient SDM pilot projects. Finally, the successful applicant will develop a methodology that identifies the factors necessary for achieving and maintaining quality, efficiency, and long-term sustainability of the SDM process for different populations and settings.

As a result of this evaluation project, DDPC is seeking to assess and evaluate the following:

Identification and utilization of effective practices that cultivate the adoption of SDM;

Determining whether Key Stakeholders developed increased awareness about SDM (e.g. individuals with ID/DD, family members and caregivers, educators, and relevant others.);

Application of the Facilitation model and related assistance provided for decision-making;

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Supporting individuals with ID/DD, family members, and caregivers to increase awareness and understanding of SDM;

How decisions made through SDM reflect the preferences of SDM decision-makers and individuals with ID/DD;

How SDM adoption and use has impacted the lives of decision-makers and instances where decision-making rights are restored to individuals with ID/DD;

If SDM has been recognized and utilized as a significant element of the transition planning process in special education;

Assessing and identifying supports that enable people with ID/DD to make their own decisions regarding guardianship; and

Establishing and implementing Learning Communities across the State to support, promote, and expand the use of SDM as an alternative to Guardianship.

Assessing the barriers to SDM implementation and identifying practical and feasible solutions.

Developing recommendations for legislative change and Medicaid Waiver Funding;

Identifying what institutional and financial arrangements were made to sustain these services and supports; and

Determining ways in which SDM can be sustained and funded through statutory changes or Waiver amendments.

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i Pell, E., & Mulkern, V., PhD. (n.d.). SUPPORTED DECISION MAKING PILOT: Program Pilot Evaluation Year 2 Report. Retrieved from http://supporteddecisions.org/wp-content/uploads/2016/11/Evaluation-Year-2-Report_HSRI-2016_FINAL-2-1.pdf ii Schindler, Michael; Meytal Segal-Reich,. "Supported Decision-Making for Older Persons in Israel: The 2015 Precedent and the Following 2016 Regulation." Elder Law Review. University of Western Sydney, School of Law. 2016. Retrieved January 07, 2018. iii See ibid. iv Glen, K. B. (2017). Piloting Personhood: Reflections From The First Year of a Supported Decision-Making Project. Cardozo Law Review, 39(495), 495-519. v Glen, K. B. (2017). Piloting Personhood: Reflections From The First Year of a Supported Decision-Making Project. Cardozo Law Review, 39(495), 518. vi http://nccc.georgetown.edu/foundations/frameworks.html vii U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Development Disabilities (2000). Amendments to P.L. 106-402 - The Developmental Disabilities Assistance and Bill of Rights Act of 2000. viii Pell, E., & Mulkern, V., PhD. (n.d.). SUPPORTED DECISION MAKING PILOT: Program Pilot Evaluation Year 2 Report. Retrieved from http://supporteddecisions.org/wp-content/uploads/2016/11/Evaluation-Year-2-Report_HSRI-2016_FINAL-2-1.pdf CPR and Nonotuck conducted their two-year SDM pilot with a collaborative approach across development and implementation stages, from pilot design to SDM outreach and education to broader communities. CPR contracted with the Human Services Research Institute (HSRI), a nonprofit research and consulting organization, to conduct an independent evaluation of the SDM pilot.