Massachusetts Real Lives and Self-Directed Supports Evaluation

Opportunity

We evaluated the implementation of the Real Lives legislation and self-direction services by the Massachusetts Department of Developmental Services. Real Lives was enacted in 2014 to expand self-direction of supports and services by people with intellectual and developmental disabilities.

Approach

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 momentum for self-direction and to spell out the ways in which DDS could facilitate increased enrollment.

Under a contract with DDS and alongside project partners, we conducted an evaluation to 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 people (families, DDS staff and individuals) receive information about self-direction?
• What do people see as the benefits of self-direction?
• What do people 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?

Examining significant regional variation in participation in self-direction in Massachusetts and program type, following the enactment of legislation to support the option.

Engaging constituents for a fuller view

We sought input from constituents 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.

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 conducted 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 program administrator and participant perceptions of the services.