To develop the recommendations included in Section One of this report, TCDD reviewed and synthesized information from a variety of sources. Specific information was obtained from research reports, demographic data and projections, and best practice models from other states. Data was obtained from Texas state agencies including the Texas Health and Human Services Commission and its Departments (DADS, DARS, DSHS, DFPS), and a review of actions taken by the Texas Legislature during the past biennium. TCDD also obtained input from Council members, and colleagues and advocates from disability groups throughout Texas.
In order to fully evaluate the state of services in Texas and make appropriate recommendations on this year’s special focus area, The State’s Allocation of Resources to Provide Long-Term Services and Supports for Texans with Developmental Disabilities, TCDD commissioned an external analysis of the current system including comparisons to other states in the nation. This external analysis came from two primary sources: the Coleman Institute on Cognitive Disabilities at the University of Colorado, and Human Services Research Institute (HSRI).
Coleman Institute on Cognitive Disabilities, University of Colorado
TCDD engaged David Braddock, Ph.D., of the Coleman Institute on Cognitive Disabilities to provide: 1) a review of current national trends in developmental disabilities through 2006 (most recent data) and beyond with Texas as the benchmark; and 2) a discussion of factors influencing service demand for developmental disabilities in Texas and the U.S.
The Coleman Institute collects annual data primarily related to financial and programmatic information from states on a yearly basis. Texas has participated in this survey for multiple years. The Coleman Institute has a 30-year trend for each state spanning back to 1977.
David Braddock, Ph.D.
Associate Vice President of the University of Colorado (CU) System and Executive Director of the Coleman Institute for Cognitive Disabilities. He has contributed to cognitive disability research, public health and social policy for more than 35 years. Braddock received Bachelor’s and Master’s degrees in Government and a Doctorate in Special Education from The University of Texas at Austin. He also completed additional graduate work in the Graduate School of Business at the same institution. Braddock was at the University of Illinois at Chicago (UIC) from 1979-2001 as Professor of Human Development and Public Health, as the founding head of the Department of Disability and Human Development and of its research institute, and as an associate dean. He was instrumental in the establishment of the nation’s first Ph.D. program in disability studies at UIC. Prior to UIC, he held positions with the Council for Exceptional Children, the Secretary’s Committee on Mental Retardation in the U.S. Department of Health, Education and Welfare, and with state developmental disabilities agencies in Texas, Missouri and Illinois.
Professor Braddock has over 200 publications and monographs in four areas:
- the comparative study of the demography and financing of services to people with disabilities in the 50 American states;
- long-term care;
- health promotion and disease prevention; and,
- public policy toward people with disabilities.
He has testified in congressional hearings on numerous occasions and in the legislatures of 12 states. He received international career research awards from The Association for Retarded Citizens (Arc) of the United States (1987), the American Association on Mental Retardation (1998), and the University Scholar Award from the President of the University of Illinois (1998). Braddock is a former president of the American Association on Mental Retardation (1993-94) and a recipient of The Arc-United States Franklin Smith Award for Distinguished National Service to the Field of Mental Retardation (2000), The Arc’s highest honor. He edited the American Association on Mental Retardation’s Research Monographs and Book Publication Program during 1997-2002 and currently sits on the Board of Directors of the International Special Olympics.
Human Services Research Institute
TCDD engaged the Human Services Research Institute (HSRI) to examine selected aspects of the present system in Texas serving people with intellectual and developmental disabilities (I/DD). In response, HSRI completed a gap analysis to serve as a discussion point for state policy leaders and others pertaining to the current state of the Texas system, plus a series of action steps that can be used to guide systematic reform. The results are included in the Special Focus of this year’s report: The State’s Allocation of Resources to Provide Long-Term Services and Supports for Texans with Developmental Disabilities. The gap analysis, action steps, and implementation strategies have been synthesized in this report. The full HSRI analysis and report can be accessed through the TCDD website.
HSRI was founded in 1976 and is a non-profit, tax-exempt corporation with offices in Cambridge, Massachusetts and Portland, Oregon. For more than 30 years, HSRI has assisted states and the federal government to enhance services and supports to improve the lives of vulnerable citizens such as people with developmental disabilities or mental illness, or low income families. HSRI has provided consultation in such areas as strategic planning and organizational change, funding strategies, systems integration, quality management and assurance, program evaluation, evidence-based practices, family support, self-advocacy, self-determination, and workforce development.
The analysis conducted by HSRI and presented in this report is based on data provided or published by the Texas Department of Aging and Disability Services (DADS) and on information assembled by the Research and Training Center on Community Living (RTC) at the University of Minnesota. RTC conducts an annual comprehensive nationwide survey of state developmental disabilities agencies to obtain comparative information and data on residential and other services and supports for people with developmental disabilities and reports that information in Residential Services for Persons with Developmental Disabilities 1. All states, including Texas, participate in this survey. HSRI also draws from data compiled by the Coleman Institute on Cognitive Disabilities at the University of Colorado.
Comparison states were selected using two main criteria: (a) states within the same federal Medicaid region as Texas (Region 6); and (b) states with large populations (8 million or more in 2006) to pinpoint areas of strengths and weaknesses in system performance. Using these data sources, HSRI was able to compare the performance of the Texas MR/RC system to that of systems in other states, as well as the national averages.
The analysis was prepared by the following HSRI staff:
- John Agosta, Ph.D.
HSRI Vice President. He completed his doctorate in Rehabilitation Research at the University of Oregon, specializing in research methods and community supports for people with disabilities. Employed at HSRI since 1983, he has been involved with nearly all efforts at HSRI surrounding family support issues, facilitated development of strategic plans, conducted analyses of state systems for people with developmental disabilities (e.g., Arkansas, Idaho, Oregon, Hawaii), and studied specific facets of the field (e.g., trends in supported employment, managed care, self-determination). Dr. Agosta is a nationally recognized expert in topic areas such as family support, self-directed supports and community systems regarding policies that affect individuals with developmental disabilities.
- Jon Fortune, Ed.D.
Policy Associate at HSRI. He has solid research skills as well as hands on experience as a state administrator. In 1990, Dr. Fortune joined the Wyoming Department of Health Developmental Disabilities Division where he has held senior management positions. He was instrumental in designing and implementing Wyoming’s system of community services for people with developmental disabilities and acquired brain injury, including developing Medicaid HCBS waivers for both populations. During his tenure in Wyoming, the state substantially reduced the number of people served in its large state facility and built an especially strong system of quality community supports. Fortune was also the chief architect of the precedent-setting Wyoming DOORS model through which people with disabilities are assigned individual budgets based on their assessed needs and other factors. Prior to joining the Wyoming Department of Health, he managed a community agency in Wyoming and held other positions in Colorado and Texas and is currently working on financial architecture in DD statewide service systems in Colorado, Florida, Louisiana, Michigan, Missouri, Oregon, Rhode Island, and Virginia. He also has had a lifetime interest in the research regarding the Alamo.
- Drew Smith, B.S.
Policy Assistant at HSRI. He is a graduate of Portland State University in Business Administration and currently works on several HSRI projects tied to developing person-centered funding strategies, assessing the impacts of service changes and reductions, and supporting self-advocacy.
- Kerri Melda, M.S.
Policy Associate at HSRI and works on several of HSRI’s person-centered funding and gap analysis projects. Ms. Melda holds a Master’s Degree in Public Policy and Administration (University of Oregon) and a Bachelor’s Degree in Special Education (Indiana University). She has been employed with HSRI since 1992. Her primary responsibilities at HSRI include project leadership, policy and statistical analyses, program evaluation, and provision of training and technical assistance. Melda currently serves as Director of HSRI’s Juntos Podemos (Together We Can) Family Center, connecting Latino families who have children with disabilities to community services and supports, and as Director of HSRI’s National Center for Family Support. She also oversees all family support related activities of the National Core Indicators project, which aggregates, analyzes and compares family support satisfaction data across 30 states.
- Bob Gettings
Former Executive Director of the National Association of State Directors of Developmental Disabilities Services. Mr. Gettings served as NASDDDS’ chief executive officer for nearly 37 years. In this capacity, he was responsible for representing the interests of the 50 state developmental disabilities agencies in Washington, D.C., and facilitating communication among the states concerning the most effective means of serving citizens with lifelong disabilities. A Life Member of the American Association on Intellectual and Developmental Disabilities, Gettings was recognized in 2000 by the National Historic Trust on Mental Retardation as one of 36 major contributors to the field during the 20th Century.
- Valerie Bradley, M.A.
Has been the President of HSRI since its inception in 1976. She has a Master’s Degree from the Eagleton Institute of Politics at Rutgers University. Ms. Bradley has directed numerous state and federal policy evaluations that have contributed to the expansion, enhancement and responsiveness of services and supports to people with disabilities and their families. She helped to design skills standards for human services workers, conducted a study to translate the experience with decentralization in Scandinavia to an American context, is the principal investigator of a national technical assistance initiative in quality assurance, and co-directs a 26-state initiative on performance measurement, the National Core Indicators. Bradley is the recent past Chair of the President’s Committee on Mental Retardation. She is also the Immediate Past President of the American Association on Intellectual and Developmental Disabilities.
When reviewing the analysis of Texas policy related to access and delivery of health and human services, it is important to understand the impact the current policies and future decisions have on the daily lives of individuals with intellectual and developmental disabilities (I/DD). Therefore, TCDD contacted individuals with I/DD and their families throughout the state and invited them to share their experiences in obtaining needed services and supports. Individuals were asked about the specific challenges they face on a daily basis and the services they need most. Individuals answered questions regarding the application process for Medicaid and non-Medicaid programs and the time spent waiting for needed services. Individuals who ultimately received services were asked to describe how the services affected their daily life. Families were also asked to speak directly to Texas policymakers and offer suggestions for change.
Individuals who willingly told their story represented all geographic regions of the state — both urban and rural areas. Each family was unique in terms of income level, ethnicity, gender, cultural background, and disability. Some were receiving Medicaid waiver services while others have been on the state’s Interest List for years. TCDD engaged an independent consultant, Therese Palombi, to talk with individuals with developmental disabilities and their family members and summarize their stories in their own words. The recommendations in this report are offered to make a difference in the lives of people who were interviewed and the many other families in Texas in need of support.
Has more than 25 years of experience working with people with disabilities in Texas. She started her career as a direct care employee and has worked in the private and public sectors for people with disabilities. She has worked for a Mental Retardation Authority (MRA) and for the Department of Aging and Disability Services (DADS) Provider Services Division. Palombi has managed various Medicaid programs and is currently doing contract work in the field. She serves as a Board member for The Arc of Texas and is on the Project Advisory Committee for EveryChild, Inc., in Austin.
Intellectual and Developmental Disabilities vs. Mental Retardation and Related Conditions
The two reference points throughout this report (I/DD and MR/RC) are not exactly interchangeable, but do overlap significantly. A reference to “people with intellectual and developmental disabilities” (I/DD) is preferred terminology when making reference to this population and is consistent with national trends. Yet, in relevant Texas statute (Title 7; Subtitle A; Chapter 531) and related administrative codes, the reference to this general population who access services are people with “mental retardation and related conditions.” For the purposes of this report, the term “mental retardation or related conditions” is used when there is reference to the Texas service system. When referencing the broader population of individuals, the term “intellectual and developmental disabilities (I/DD)” is used.
- Prouty, R., Smith, G. and Lakin, K.C. (eds.) (2007). Residential Services for People with Developmental Disabilities: Status and Trends Through 2006. Page 92. Minneapolis: University of Minnesota, Research and Training Center on Community Living. ↩