Goal: People with disabilities should be able to access support with making decisions about their life, when needed. Supported decision making protects both personal choice and the safety/well-being of individuals when making choices
Problem: The vast majority of Texans with disabilities can make decisions for themselves with appropriate supports. Unfortunately, many other individuals with disabilities need the assistance of a volunteer advocate to help with gathering information, weighing the options, understanding consequences and communicating the decision. While some money management and medical decision making structures exist, Texas does not have adequate supportive decision-making assistance for other life decisions.
Recommendation: The Texas Legislature needs to support a Volunteer Advocate Pilot Project to provide access to supported decision making supports for people in Intermediate Care Facilities for the Mentally Retarded (ICFs-MR).
Background:
Supported Decision Making Can Fill a Critical Gap in Ensuring Individual Choice
We all need help making decisions. We talk with friends, family members and colleagues about moves we might make, cars we might drive and jobs we might take. People with disabilities need that same support system, but may not have an informal network of support, or may not know how to access that support.
The volunteer advocate pilot would offer the opportunity for supported decision to individuals with intellectual disabilities, by offering the support needed so that these individuals can make their own life decisions.
Supported decision making differs from surrogate decision making in that the individual retains the right to make his or her own decisions. Supported decision making assists an individual to understand the information needed to make certain life decisions such as where an individual wants to live, who they want to live with, where they want to work, what they want to do in the leisure time, etc. With supported decision making, individuals retain their civil rights.
Justification: Texas does not currently offer this support to individuals with intellectual disabilities. The DPC supports the development of a “Volunteer Supported Decision Making Advocate” (Volunteer Advocate) pilot for individuals with intellectual disabilities. This pilot would be available to help individuals with intellectual disabilities living both in institutions and those living in the community to understand their personal options, support options, opportunities and responsibilities in order to help them to remain as independent as possible. The pilot would also help to address concerns about individuals in state schools who have expressed a desire to leave the institution, but have been denied that opportunity by the state school staff (interdisciplinary teams).
In order to determine the best way to support individuals with intellectual/cognitive disabilities in their decision making, a formal system of support should be developed. A volunteer advocate pilot would provide the opportunity to design, develop and implement a system to meet the decision-making support needs of individuals with intellectual disabilities. This pilot would ensure that a trained and supervised advocate is available for support, it would eliminate conflicts of interest that exist in the current system, and it would ensure comprehensive information is available to and understood by the individual. Evaluation of the pilot would provide ongoing information on how to improve and expand these services.
The primary purpose of the pilot is to build a system of support that allows an individual’s civil rights to remain intact, yet provides the support needed to ensure that the individual’s preferences are honored.
The Texas Legislature Identifies Need
Members of the Texas Legislature have recognized the need to make independent support available for people in institutions and the community who do not have a guardian. A Volunteer Advocate pilot project will provide the missing supports and training in decision making that many people need, without incurring the costs and removal of rights of a court-appointed guardianship.
The guardianship process is expensive, highly restrictive, difficult to reverse, and does not ensure that the individual’s preference is the basis for a guardian’s decision. The only option for a guardian may be a local guardianship program. These are often under funded and limited in geographical reach.
The Volunteer Advocate pilot project, in conjunction with other community supports such as money management services, special-needs trusts, powers of attorney, and representative payees, creates a robust network of services that protects an individual’s autonomous decision making that is respected by service providers, friends and the community.
A Proven Model: Court Appointed Special Advocates
Similar volunteer advocate programs have proven very successful for other populations, including CASA: Court Appointed Special Advocates. Like the CASA model the Volunteer Advocate pilot project would provide significant training, require a minimum service commitment, and match a volunteer advocate with a pilot project participant. Also like CASA, the focus is on the individual and not the provider or other interested parties.
Texas Can Fill the Gap
The Disability Policy Consortium supports the Texas Legislature in directing the Health and Human Services Commission and the Department of Aging and Disability Services (DADS) to implement a Volunteer Advocate pilot project and track its success. Working in cooperation with an advisory group of people with disabilities, families and advocates, DADS would contract with an outside provider that would adhere to the philosophy of self-determination in providing supported decision making supports. The pilot project would include at least one urban site and at least one rural site and provide support to individuals eligible for ICF-MR services. Approximately 50 percent of the participants of the pilot project shall be individuals living in community settings and approximately 50 percent shall be individuals living in institutional settings. At least one site would provide assistance to individuals residing in a state school. DADS would use the Human Services Research Institute’s Core Indicators or similar evaluation criteria in assessing project outcomes.