Through the pilot, nine individuals with intellectual or developmental disabilities (I/DD) created support networks to help them reach their own decisions on life matters, such as housing, health care, jobs, and relationships. CPR provided legal representation and training and Nonotuck care managers support and monitor the participants. The individuals in the pilot lived in Western Massachusetts.
The pilot was guided by an Advisory Council (see below for list of members) which included people with disabilities, advocates, judges, and service providers.
Human Services Research Institute (HSRI), a nonprofit research and consulting organization, conducted an independent evaluation of the pilot to identify best practices and challenges for supported decision-making. Read HSRI’s evaluations of the pilot project.
Goals of CPR-Nonotuck Pilot Project:
(1) Maximize individuals’ independence. By making their own decisions with the help of supporters, pilot participants will gain confidence and become better self-advocates. They will have both a voice and a presence in the community.
(2) Identify best practices that can be replicated to advance supported decision-making as an alternative to guardianship.
How The Pilot Project Worked
- Pilot participants entered into Representation Agreements that describe how supported decision-making will work for them. These agreements specified areas where they need help making decisions and designate supporters to help them reach their decisions.
- Supporters were selected by the pilot participant. Supporters can be family members, friends, and providers. Supporters sign statements that they will respect the pilot participant’s choices and decisions.
- Supporters can help with decisions about anything the pilot participant wants, such as healthcare, finance, employment, living arrangements, and relationships.
- Pilot participants signed Representation Agreements before a notary public who stamps, signs, and dates the Agreement.
- Pilot participants also used other legal forms to establish their choices. Many pilot participants designated a health care proxy who can make choices about health care if the pilot participant becomes incapacitated. Additionally, some participants executed a form for a durable springing power of attorney.
Key demographic information from the pilot
- Age When SDM Agreements executed: ranged 23 to 78 yrs.
- Gender: 66% women
- Primary means of communication:
- All use at least some speech but there is wide range of vocal expression, e.g. 1 uses “yes” and “no” with facial expression; 1 relies heavily on text messaging; 1 needs lots of extra time to process information and respond
- I/DD diagnoses: 2 mild intellectual disability, 8 moderate intellectual disability, 1 without an ID diagnosis, 1 with autism
- Behavioral health diagnoses:
- 1 Borderline personality disorder, history of suicidal preoccupation
- 2 Bipolar mood disorder
- 4 Anxiety disorder
- 2 Depression/dysthymia
- 1 attention deficit hyperactivity disorder (ADHD )
- 1 Psychotic disorder
- 1 Post-traumatic stress disorder (PTSD)
- Home: All live with caregivers using a shared living or family caregiver model. 2 lived for decades in Massachusetts state institutions
- Guardian status: 2 had full guardians, 1 discharged thus far; both take psychiatric medications pursuant to a court order; all participants are or could be “at risk” of guardianship
HSRI’s Independent Evaluation of the Pilot
Evaluation Finding: SDM adopters did not experience abuse, neglect or financial exploitation through use of SDM.
Pilot participants stated that the structure of SDM – (1) selecting people they can count on to help them make decisions and (2) having more than one supporter – reduces risk of abuse.
Evaluation Finding: Positive changes occurred for SDM adopters who exercised their decision making rights with tailored decision assistance from trusted supporters.
SDM adopters reported increases in:
pride, self-confidence, happiness, willingness to try new experiences, taking greater control of their health & mental health care, and helping others more
Members of CPR Nonotuck Pilot Advisory Council
- Fred Bona, parent of an individual with a disability
- Nickie Chandler, nurse and guardian to an individual with a disability
- Paige Emerson, Stop & Shop employee
- The Hon. Kristin Booth Glen (retired), New York Surrogate Court
- Alison Hillman, program manager, Disability Rights Initiative, Open Society Foundations
- Johnathan Jenkins, Guido’s employee and pilot participant
- Michael Moloney, CEO, Horace Mann Educational Associates
- The Hon. Gail Perlman (retired), Hampshire County Family and Probate Court
- Pixie Plummer, M.D., Baystate Health Services
- Leo Sarkissian, Executive Director, The Arc of Massachusetts
- Karen Talley, attorney, Committee for Public Counsel Services