Ensure State School Residents´ Rights

Goal: To ensure that individuals with intellectual and other developmental disabilities residing in state institutions who want to live in the community are able do so as soon as possible and are able to access the support and services they need for a safe and healthy transition.

Problem: Texas leads the nation in the number of individuals with disabilities institutionalized in state operated facilities (state schools). State institutions are the most costly form of care for individuals with intellectual disabilities. Texas has invested a significant amount of funds in state schools. State school appropriations increased by $161.7 million ( 54.5 percent increase), while the state school census declined by 413 persons (7.8 percent decrease) between fiscal years 1999 and 2007. Continued reliance on 13 state schools is an inefficient use of limited state resources. Additionally, the Department of Justice has documented the unsafe conditions currently existing in many state schools. Residents’ rights, health and safety must be a priority.

Recommendation: Major systems changes are required to ensure individuals in state institutions receive appropriate services based on the values of self-determination.

Specific Recommendations for Change:

• Every individual residing in a state school who expresses an interest in transitioning to community services should have the opportunity to explore the options and decide where they want to live. If there are legal reasons that require the individual to remain in the facility, this should be thoroughly explained to the individual and his/her Legally Authorized Representative’s (referred to as LARs) during the Community Living Options Information Process discussions. Additionally, all rights to appeal any directive that the individual must remain in the state school should be fully explained and pursued if the individual/LAR desires.
• Require routine review of individual state school commitments and develop alternative community-based commitment options meeting the needs of the individuals.
• Individuals residing in state institutions should have a presumptive eligibility for community services. If an appropriate option is not readily available, Texas should develop and fund a mechanism to expand community capacity to remove any existing barriers identified by Interdisciplinary Team’s (referred to as IDTs) teams or others and assist with transitioning the individual as soon as possible.
• Create an external oversight and review process for IDT team decisions and educate state school residents and their LARs about the opportunity to appeal in formats that are easy to understand. This protection is needed to address a significant conflict of interest that occurs when state school staff have final decision making authority regarding decisions that potentially benefit staff, for example, maintaining a high state school resident census.
• Admission and continued eligibility requirements should be strictly adhered to in order to prevent any unnecessary institutionalization, protecting both the individual and Texas taxpayers. Least Restrictive/Most Integrated Setting policies, if implemented and enforced, would reduce admissions and/or length of stay for some individuals.
• Reduce transfers from the state school to another state school or large congregate community-based ICFMR by fully informing residents and their families of the enhanced rights and opportunities afforded in Medicaid Waiver programs that are not available in the ICF-MR program.

Background: Too many individuals remain in state schools even though they have expressed an interest in transition to community living. Additionally, many more individuals in state schools have not had the opportunity to explore options and make informed decisions on where they want to live. Many of these individuals are being denied the right to choose.

Barriers continue to exist that slow-down or block an individual’s ability to leave. For example:

• Sixty-percent of the individuals residing in state institutions (schools) do not have guardians and should have the right to decide where they want to live and how they want to receive their supports and services.
• IDTs use inappropriate criteria to overrule individual’s or their LARs wishes and declare that community placement is not appropriate.
• Individual state school commitments are not routinely reviewed.

Now, is the time to address these barriers. In the State Mental Retardation Facility Report draft released by the Department on Aging and Disability Services (referred to as DADS) in June 2008, DADS projected that approximately 700 individuals residing in state schools will transition to community services in the next six years. If the DADS estimates are realized, changes to the state school system and in particular, to the system for transitioning individuals to community placements will be necessary. It would be economically inefficient to continue to operate 13 state schools/centers with a significantly smaller population. State school costs reflect the most expensive form of care for individuals with intellectual and developmental disabilities.