Position Statement — Stakeholder Involvement in Service System Redesign

People with intellectual and other developmental disabilities and their families are the consumers of long-term care services and must be involved in all aspects of planning, service delivery, and evaluation of service delivery programs. Stakeholder groups and advisory boards at the local, state, and national level controlling health and human services, education, employment, and housing must include people with intellectual and developmental disabilities and their families. Adequate training and education must be provided to ensure informed participation. Professionals must acknowledge the value of the expertise and knowledge of people with intellectual and other developmental disabilities and their families. This requires new skills and attitudes for both professionals and such consumers.

Service system redesign groups must be accessible for participation in a variety of ways. These include flexible meeting times; sufficient advance notice of meetings; accessible locations; online, video, and phone participation; accommodations for people who are deaf or have other hearing impairments; use of social media; and other methods to increase stakeholder involvement. Individuals participating in state-mandated task forces should receive the necessary supports and accommodations and should be reimbursed for any necessary expenses to ensure their full participation on those committees.

We believe that the following principles must also be followed in designing or redesigning service delivery systems in which people with intellectual and related developmental disabilities and their families will become major stakeholders:

  • Self-determination must guide the redesign of the entire system of long-term care. Self-determination means control over a place to call home, real membership in the community, support for long-term relationships with others, and the generation of private income through work. Consumers must have more individual choice over services and control over the funding allotted to them. (See The Arc’s Position Statement on Self-Determination.)
  • System redesign must seek to create flexibility in regulatory systems to foster the exercise of freedom and responsibility by recipients. System redesign must also seek cost effectiveness, when appropriate.
  • While the service system should include internal controls, oversight for the ultimate protection for consumers must remain outside the service delivery system, including consumers, advocates, family members, and guardians.

Issue

For many years, the medical model of disability was used as a framework to build an infrastructure of services and supports which do not adequately meet the individual needs of Minnesotans with intellectual and developmental disabilities (IDD) and their families.

The present system severely limits the exercise of freedom and responsibility by most individuals accessing long-term services and supports. Laws and regulations often restrict individuals from leading self-directed lives, contributing to society, and truly belonging in their communities.

Stakeholders demand a stronger emphasis on self-determination and consumer control in the planning and delivery of services. People with disabilities and their families want individual choices, and more control of their services and funding, rather than policies which restrict their choices and disregard their desires.

Position

Stakeholder involvement is essential for improvement and redesign of a human service system that is flexible and responsive to individuals’ support needs and expands their choice and control, while using resources effectively. As the experts in their lives, people with IDD and their families have valuable insights and observations to contribute. Therefore, they must be actively involved in all efforts to reform systems and redesign services and supports that better meet individualized needs.

People with IDD and their families accessing services and supports must be involved in all aspects of planning, service delivery, and evaluation of policies and programs. Stakeholder groups and advisory boards at the local, state, and national level must include people with IDD and their families.

Adequate training and education must be provided to ensure informed participation. Professionals must acknowledge the valuable expertise of people with IDD and their families.

Service system redesign groups must be accessible for participation in a variety of ways, which requires changes in current practice and “accepted” standards of practice. These include:

  • flexible meeting times,
  • sufficient advance notice of meetings,
  • accessible locations,
  • remote participation options,
  • materials drafted in plain language, and
  • other accommodations and methods to increase stakeholder involvement.

Individuals participating in state-mandated task forces should be reimbursed for any necessary expenses to ensure their full and ongoing participation.
We believe that the following principles must also be followed in designing or redesigning service delivery systems:

  • Self-determination must guide the redesign of the entire system of long-term services and supports. Self-determination means control over a place to call home,
  • meaningful belonging in the community,
  • support in building and maintaining healthy relationships and informal support networks, the ability to secure competitive employment, and build personal wealth.

While the service system must include internal controls, independent oversight should be driven by an external third party which includes individuals with IDD, their family members, advocates, and stakeholders.

Resources:

The Arc U.S. Position Statement on Self-Determination

The Arc Minnesota Position Statement on Self-Directed Services

Plain Writing Act of 2010, Public Law 111-274

 

This statement was approved by the Delegate Body at The Arc Minnesota Annual Business Meeting on October 28, 2007.

Revised Statement Drafted by The Arc Minnesota Position Statements Task Force on June 18, 2013.

Revised Statement Is Again Edited and Then Approved by The Arc Minnesota Position Statements Task Force on June 22, 2013.

This statement was approved by The Arc Minnesota Public Policy Committee on August 21, 2013.

This statement was approved by The Arc Minnesota Board of Directors on September 23, 2013.

This statement was approved by delegates at The Arc Minnesota Annual Business Meeting on November 2, 2013.

Statement Revised by The Arc Minnesota Position Statement Work Group on September 26, 2019.

This statement was approved by The Arc Minnesota Public Policy Committee on October 28, 2019.