Evaluation of Self-Directed Supports

IDD

Supporting self-determination for people with IDD in Massachusetts

Along with our project partners, we’re evaluating the impact and reach of the implementation of the Real Lives Law by the Massachusetts Department of Developmental Services. Real Lives was enacted in 2014 and seeks to expand self direction of supports and services by people with intellectual and developmental disabilities.

Impact

The Real Lives Law seeks to expand the number of people with IDD who manage their own supports and services, with the main goal of supporting people to live self-determined lives.

We’re conducting an independent evaluation to assess the implementation of the law by the Massachusetts DDS, determining the effectiveness of outreach and enrollment efforts, assessing infrastructure, and looking at outcomes.

Services
  • Evaluation of outreach
  • Mail surveys of participants
  • Key informant interviews
  • Client data analyses
  • Structured evaluation of training and outreach
  • Reporting to stakeholders

Examining early implementation efforts

Self-direction has been an option in Massachusetts since the 1990s, but the program has grown very slowly since that time. The Real Lives legislation marked an effort to provide some momentum for self-direction and to spell out the ways in which DDS could facilitate increased enrollment.

Under a contract with DDS and alongside our project partners, we’re conducing an evaluation to address look at the implementation of Real Lives and address fundamental questions:   

  • What are the characteristics of those who opt for self-direction?
  • What are the regional differences in the number of individuals self-directing?
  • What services and supports are individuals are most likely to include in their individual budgets?
  • How did DDS communicate the option?  How do stakeholders (families, DDS staff and individuals) receive information about self-direction?
  • What do stakeholders see as the benefits of self-direction?
  • What do stakeholders see as the hindrances to self-direction?
  • How do service coordinators view their roles?  What are the positive experiences with self-direction?  What are the constraints?
  • What are other states doing to enhance participation?
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Examining significant regional variation in participation in self-direction in Massachusetts and program type, following the enactment of legislation to support the option.

Engaging stakeholders for a fuller view

We sought input from stakeholders of all types to understand program infrastructure and implementation from their perspectives. Our data collection efforts included:

  • Key informant interviews
  • Focus groups with area directors and program participants
  • Reviews of DDS materials
  • In-person observations of a transition fair, several self-advocate support groups, a family support group, a MASS Annual Meeting, and other educational and outreach activities
  • Surveys of families, program participants, DDS service enrollees not participating in self-direction, and service coordinators  

Examining national best practices

We identified six state DD agencies that had significant experience with developing self-direction options and conducted interviews with key experts from these states.  Each interviewee expressed a belief that self-direction is an important option, and each state has specific plans to continue to grow self-direction. Some of the lessons that can be drawn from the experiences in these states include:

  • Programs must be clear and simple with a modest number of self-direction options;
  • Clear and organized policies and procedures make the self-direction option more accessible;
  • States with self-direction specialists who became proficient in helping people decide on self-direction and then operationalize their plans were more successful;
  • Support from peer mentors and experienced family members is an important ingredient;
  • Special supports are needed for participants who do not have a large involved network of family and friends.  

“I don’t have to go to programs I don’t like or that aren’t for me.” “I’m now in a jazz band!”

Quotes from two people who are now self-directing their supports

Client(s):

Massachusetts Department of Developmental Services

Project Partner(s):

Kevin Mahoney, founding director of the National Resource Center for Participant-Directed Services

Massachusetts Advocates Standing Strong (MASS)

ASAN (Autistic Self Advocacy Network)

Public Partnerships, Ltd

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