Executive Order  No. 656: Establishing a Statewide Strategy To Support Adults With Profound Autism

WHEREAS, Massachusetts has a long-standing commitment to supporting individuals with disabilities and their families; 

WHEREAS, Massachusetts is committed to advancing equity, dignity, and opportunity for individuals with autism spectrum disorder and Intellectual and Developmental Disabilities (IDD) and their families; 

WHEREAS, autism and IDD affects individuals throughout their lives in diverse ways, with varying strengths, needs, and support requirements, contributing to and enriching families and communities throughout the state; 

WHEREAS, adults with autism and IDD need access to housing, health care, employment supports, and other services that promote stability, independence, inclusion, and quality of life; 

WHEREAS, adults who have both autism and IDD, known as Adults with Profound Autism who may require lifelong, 24/7 support due to significant cognitive, behavioral, and medical complexity — represent a highly vulnerable population in Massachusetts; 

WHEREAS, prevalent data indicate that the population of Adults with Profound Autism in Massachusetts is growing; 

WHEREAS, the needs of Adults with Profound Autism intersect across multiple public systems, including health care, housing, human services, and workforce development, and require thoughtful coordination among state agencies and providers; 

WHEREAS, demographic trends and evolving understandings of profound autism underscore the importance of forward-looking planning to ensure that state systems are prepared to meet the needs of Adults with Profound Autism now and in the future; and

WHEREAS, Massachusetts has a strong history of innovation in disability services and seeks to build on that foundation by strengthening cross-agency collaboration, promoting person-centered approaches, and supporting innovative models that improve outcomes and long-term sustainability;

NOW, THEREFORE, I, MAURA T. HEALEY, Governor of the Commonwealth of Massachusetts, by virtue of the authority vested in me by the Constitution and laws of the Commonwealth, hereby order as follows:

SECTION 1. PURPOSE AND SCOPE

This Executive Order establishes a framework for the development of a Statewide Strategy to Support Adults with Profound Autism, with the goal of improving coordination, promoting innovation, and advancing outcomes for Adults with Profound Autism and their families across the Commonwealth.

SECTION 2. DEFINITIONS

For purposes of this Order, “Adults with Profound Autism” shall mean individuals age 22 and over, who, consistent with the definition recognized by the Lancet Commission on Autism, have autism spectrum disorder and require 24-hour support and assistance due to a significant intellectual disability and limited to no language skills.

SECTION 3. STATEWIDE STRATEGY FOR ADULTS WITH PROFOUND AUTISM

The Executive Office of Health and Human Services (EOHHS) shall convene and coordinate an interagency and stakeholder advisory group (the “Advisory Council”), to support the development and implementation of the Strategy, facilitate information sharing, and elevate perspectives from individuals with lived experience.  The members of the Advisory Council shall include the Commissioner of the Department of Developmental Services, or their designee; the Commissioner of the Department of Mental Health, or their designee; the Medicaid Director, or their designee; the Secretary of the Executive Office of Housing and Livable Communities, or their designee; the Secretary of the Executive Office for Administration and Finance, or their designee; the Chairs of the Joint Committee on Children, Families, and Persons with Disabilities, or their designees; and up to 10 subject matter experts including individuals appointed by the Governor who represent families of Adults with Profound Autism, providers, clinicians, and advocates.

The Strategy shall be informed by stakeholder engagement, including individuals with autism, families, advocates, providers, and subject matter experts from across the Commonwealth, and shall seek to:

• Report on the prevalence of Adults with Profound Autism in Massachusetts;
• Strengthen coordination across state systems serving adults with Profound Autism, including exploring eligibility requirements across service systems;
• Promote person-centered, strengths-based approaches that recognize the needs of Adults with Profound Autism;
• Identify opportunities to improve access to stable housing, health care, community-based services, and meaningful daily activities;
• Encourage innovative residential living and service models that support safety, stability, and quality of life;
• Improve the use of data to understand population needs, service utilization, outcomes, and efficient use of state resources over time;
• Support a sustainable and well-trained workforce responsive to level of care and support needs; and
• Inform future policy and budget planning in a manner consistent with the Commonwealth’s long-term fiscal responsibility.

The Strategy shall be presented to the Governor as a written report to inform policy and budgetary decisions regarding services and supports for Adults with Profound Autism. 

SECTION 4. INNOVATION AND LEARNING OPPORTUNITIES

As part of the Strategy, EOHHS may identify opportunities to test, learn from, and evaluate innovative approaches to supporting Adults with Profound Autism, including place-based or integrated models that bring together housing, services, and health care in new ways, consistent with state and federal law.

Any such initiatives shall be designed to inform future policy decisions and shall emphasize learning, collaboration, and continuous improvement.

SECTION 5. COORDINATION AND ADVISORY STRUCTURE

The Advisory Council shall support the development and implementation of the Strategy, facilitate information sharing, and elevate perspectives from individuals with lived experience.

All members of the Advisory Council shall serve in an advisory capacity, without compensation, and shall not supplant the statutory authority of any agency.

SECTION 6. EFFECTIVE DATE

This Executive Order shall take effect immediately and shall continue to be in effect until amended, superseded, or revoked by subsequent Executive Order.