Pilot Project

The Supported Decision-Making Pilot Project

The CPR-Nonotuck Supported Decision-Making Pilot Project – one of the first demonstrations in the nation – is grounded in our shared values and shared belief that all people must be able to exercise choice in all aspects of their lives.

So far, seven individuals with intellectual or developmental disabilities (I/DD) have created support networks to help them reach their own decisions on life matters – housing, health care, jobs, relationships, etc.

READ THE EVALUATION REPORT FOR YEAR 2 OF THE PILOT PROJECT

How It Works

  • Individuals with I/DD enter into Representation Agreements in which they specify areas where they need help making decisions and designate supporters to help them reach their decisions.
  • Support areas include health care, finances, employment, living arrangements and relationships.
  • Network supporters, who sign statements that they will respect the person’s choices and decisions, can be family members, friends, and past and current providers.
  • Individuals sign their Representation Agreements before a notary public who stamps, signs and dates the document, making it official, and hopefully, a document that will be honored in the community by doctors, merchants, landlords, etc.

A Facebook posting celebrating the night five participants signed their Representation Agreements triggered more than 3000 hits across the country.

The Pilot includes a research component through the non-profit research organization, Human Services Resources Institute (HSRI), which periodically interviews participants, supporters, Project staff, and community members to help build an evidence base for supported decision-making.

In addition, the Pilot is guided by an Advisory Council comprised of people with disabilities, advocates, judges and providers. The Council convenes three or four times a year to review materials, provide direction and guidance. In essence, it acts as the Project’s support network.

Pilot participants range in age from 24 to 79. They have varying disabilities and require varying levels of support. Some have as few as two people on their support networks, while others have as many as 10 – often spanning generations from grandparents to parents to siblings.

Two participants are under guardianship. They and their respective guardians support discharge of the guardianship. The Project will provide legal representation to seek discharge.

In conversations with individuals, family members and the general public, we have found other documents that supplement and complement the Representation Agreement. They include a health care proxy that designates a person or an alternate to represent an individual’s health needs and preferences when s/he is incapacitated; and a document that assigns to a particular person a durable springing power of attorney that goes into effect when an individual is deemed to be incapacitated.