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State of Services and Supports for Persons with ­Developmental Disabilities

2008 Texas Biennial Disability Report

2008 Texas Biennial Disability Report

Disability Rates in Texas

The term “developmental disabilities” refers to a group of conditions or disabilities that occur prior to or at birth, or during childhood (e.g., before age 22), and result in substantial functional limitations in three or more life activity areas and reflect the individual’s need for individualized supports and assistance. Individuals with limitations may have various diagnoses such as mental retardation, cerebral palsy, epilepsy, autism, severe learning disabilities, head injuries, and others that may result in limitations in intellectual or physical abilities. People with such disabilities may need assistance throughout life in self-care, employment, housing, and social interaction. In the United States, approximately 1.7 percent of general population has a developmental disability, or approximately 411,500[4. Administration on Developmental Disabilities and U.S. Census Bureau, Population Finder for Texas at http://www.census.gov/.] individuals in Texas.

Most people with developmental disabilities receive key supports from their families or live independently with or without publicly-funded developmental disabilities services. Public developmental disabilities service systems provide resources and supports to a relatively small percentage (approximately 20-25 percent) of all individuals with developmental disabilities. Public systems focus principally on people who have functional limitations and require services over and above the supports that their families are able to provide or that they can obtain through generic human services programs.

Trends in Service Demand

Demand for publicly-funded developmental disabilities services is growing nationwide and has been increasing at a rate slightly greater than population growth alone. Increased demand is the product of several factors including the development of community services and supports that better meet the needs of individuals and families, and the increased longevity of people with developmental disabilities. The mean age at death for persons with intellectual disabilities or developmental disabilities rose from 19 years during the 1930s to 66 years in 1993, an increase of 247 percent[5. Janicki, M.P., Dalton, A.J., Henderson, C.M., & Davidson, P.W. (1999). Mortality and morbidity among older adults with intellectual disability: Health services considerations. Disability and Rehabilitation, 21, 284-294.]. The life span of people with developmental disabilities has increased as the result of better health care and is approaching average lifespan of the general population. This increased longevity has two ramifications for developmental disabilities service systems: (a) “turnover” of individuals receiving services is reduced (and, consequently, there is less capacity to absorb new demand); and (b) there is a growing population of individuals who live in households in which the primary caregivers are themselves aging. About 25 percent of people with developmental disabilities reside in households in which the primary caregiver is age 60 or older. As caregivers grow older, their capacity to continue to support individuals with developmental disabilities diminishes.

Over the past several decades, many states have reexamined the delivery of services to their citizens with developmental disabilities. During this timeframe, the general trend has been towards a decentralization of services where individuals can receive home and community-based services (HCBS) instead of “treatment” in state institutions. This trend is the result of research, advocacy and Federal actions such as the Americans with Disabilities Act, the Individuals with Disabilities Education Act, and Olmstead v. L.C. Two common themes running through these items are the need to provide services in the least restrictive manner possible and the philosophy that individuals should be supported to make their own decisions concerning their lives.

Texas’ Ranking in Nation

Texas ranks 49th out of the 50 states in providing community-based services to individuals with developmental disabilities — above only Mississippi. Nearly 13 percent of the nation’s individuals with disabilities that reside in large state facilities are located in Texas.[6. United Cerebral Policy. 2007. “The Case for Inclusion.” Washington, D.C.]

In comparison to other states, Texas falls significantly below the national average in many areas. Consider that:

  • Texas spends significantly less than other states on Medicaid services to people with mental retardation or a related condition (MR/RC). On average, in 2006, states spent $131.29 per citizen on residential services for these individuals, while Texas spent just 41 percent of the national average: $53.91 (Braddock et al., 2008).
  • In 2006, the number of Texans receiving community residential services per 100,000 people in the state’s overall population was 35 percent less than the national average. (Texas serves 92 people per 100,000 versus the national average of 142 per 100,000). This means that Texas would need to provide residential services to 50 more people with MR/RC per 100,000, or 11,704 individuals, just to reach the national average (Lakin et al., 2007).
  • In 2006, Texas furnished Medicaid-funded services at a rate that is 43.3 percent below the nationwide average (109 persons per 100,000 population in Texas vs. 193 persons per 100,000 population nationwide as can be seen in Chart 1). For Texas to serve the national average of people per 100,000 population, the state would need to provide Medicaid services to roughly 19,662 more people.
  • Chart 1 also illustrates that among the comparison states, only Georgia serves fewer people per 100,000 population (i.e., 109 in Texas to 104 in Georgia).

Chart 1: People Receiving Medicaid Services per 100,000 (2006)

United States - 193; Texas - 109; Arkansas - 176; Oklahoma - 185; Louisiana - 259; New Mexico - 198; California - 219; Florida - 191; Georgia - 104; Illinois - 170; New Jersey - 145; New York - 323; North Carolina - 134; Ohio - 183; Pennsylvania - 237.

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities – Status and Trends Through 2006.

People receiving Medicaid services per 100,000 in 2006 were:

  • United States – 193
  • Texas – 109
  • Arkansas – 176
  • Oklahoma – 185
  • Louisiana – 259
  • New Mexico – 198
  • California – 219
  • Florida – 191
  • Georgia – 104
  • Illinois – 170
  • New Jersey – 145
  • New York – 323
  • North Carolina – 134
  • Ohio – 183
  • Pennsylvania – 237

Interest Lists: Time Spent Waiting for Services

Ideally, once an individual applies for services and is deemed eligible, he or she will start receiving services with reasonable promptness. General standards indicate that individuals with emergency or crisis needs should receive services within 90 days or sooner. Likewise, those with critical near-term needs should receive services within 6-9 months[7. Federal Medicaid Act 42 C.F.R. § 435.930(a).].

When these standards cannot be met, Texas maintains “interest lists” for people who are unserved and seeking services, or underserved and seeking additional or changed services. As shown by Table 1, (as of June 30, 2008) DADS reported that 79,925 individuals were on the Interest Lists for six of seven Medicaid HCBS waiver programs operated by the department. This does not include participants in the STAR+PLUS waiver program, with 37,187 (duplicated) of those individuals on the HCS Interest List alone.

It is not known how many of the 47,527 individuals currently receiving waiver services have intellectual and/or developmental disabilities or other potentially qualifying conditions. However, individuals with I/DD are primarily served within the HCS, CLASS and TxHmL waiver funded programs. The HCS waiver, which is used to fund several community residential support options, serves the second highest number of people (i.e., 13,889) and has the largest interest list. Projections indicate the HCS Interest List will likely grow to 40,000 individuals by 2010[8. Health and Human Services System, (2008). Strategic Plan 2009-13. Chapter VI, 162.].

Table 1: Individuals on Interest Lists by Longest Time Waiting for Services

BR 2008 - Table 1
Program# Currently Served *# on Interest ListLongest Time on Interest List
Community Based Alternatives (CBA)21,05029,3162-3 years
Integrated Care Management (ICM) 1915(c) waiver2,540*2631-2 years
Community Living Assistance and Support Services (CLASS)3,92921,4966-7 years
Deaf-Blind with Multiple Disabilities (DB-MD)153281-2 years
Medically Dependent Children Program (MDCP)2,5419,9202-3 years
Home and Community-based Services Program (HCS)13,88937,1878-9 years
STAR+PLUS 1915(c) waiver3,425*2,9162-3 years
Total47,527**100,335N/A

These counts reflect the end of June 2008.

* Individuals who are not SSI eligible and who want 1915(c) CBA-like waiver services are placed on an interest list. This interest list is managed by DADS and the numbers above reflect those non-SSI individuals on the interest list whose eligibility has not yet been determined.

** Count is duplicated. The unduplicated count is 82,050.The unduplicated count without STAR+PLUS is 79,925.

Source: Texas Department of Aging and Disability Services, Presentation to House Select Committee on Services for Individuals Eligible for Intermediate Care Facility Services, August 22, 2008.

Table 2: Percentage of Individuals Waiting for Specific Waiver by Time Spent Waiting

Table 2 illustrates the time people generally spend waiting to receive services by waiver program. As shown, waiting time varies by waiver, with waits for the HCS and CLASS waivers being longest. Texans with MR/RC can wait up to nine years to receive HCS services with, 30.1 percent waiting for five years or more and the average wait being 3.5 years.

BR 2008 - Table 2
Time on Interest ListCBAICMCLASSDBMD*MDCPHCS
0-1 years82.6%99.2%27.0%46.4%47.1%17.9%
1-2 years10.7%0.8%22.6%53.6%38.4%17.5%
2-3 years7.0%0%13.9%0%14.4%13.4%
3-4 years0%0%12.3%0%0%10.7%
4-5 years0%0%12.0%0%0%10.3%
5-6 years0%0%11.9%0%0%9.9%
6-7 years0%0%0%0%0%9.4%
7-8 years0%0%0%0%0%7.7%
8-9 years0%0%0%0%0%3.1%
9+ years0%0%0%0%0%0%

Some people on the DBMD Interest List have reached the top of the list multiple times and declined services, yet choose to remain on the list. Additionally, the list includes individuals under the age of 18 not yet eligible to receive services.

Source: Texas Department of Aging and Disabilities, (2008, June 30). DADS Interest List. Retrieved September 2008.

Future Demand for Services

If nothing is done to intervene, the number of people on interest lists is expected to grow larger due to the projected growth in the state population. The Texas population is growing faster than the national population. Between 1990 and 2007, the Texas population grew by 41 percent, from 17.0 million to 23.9 million, while the U.S. population increased by only 21 percent, from 249 million to 302 million. According to the Texas State Data Center (The University of Texas, San Antonio), the population of Texas is likely to reach 25 million by 2010 and could reach 51.7 million by 2040. Given such growth, it will be an extraordinary challenge to address the backlog of unmet needs for long-term services, while simultaneously keeping pace with population-driven growth in demand. Complicating matters, HSRI finds that in most states, waiting lists grow at a rate greater than population growth alone. Based on national comparisons, it is not uncommon to observe annual increases in demand of four percent or more. Thinking more conservatively, if the number of individuals on Texas’ Interest Lists were to grow by two percent per year (over population growth), the list would swell to 99,016 people by 2018, or by an average of 1,966 additional individuals per year.

“Every decision we make is based on these Medicaid waiting lists. I would rather go to war than lose my place on the waiting list. I am willing to leave my family if I can get services for my child.”

– Master Sergeant Stephen Spark, (one year from retirement)

Texas has recently sought to accommodate unmet service demand by allocating funds for system expansion — specifically allocating additional funds for waiver services (79th and 80th Texas Legislature). These efforts have helped thousands more people; however, these allocations are insufficient to meet the overall demand. Texas presently has no comprehensive, long-range plan for closing the gap between system capacity and service demand. No targets have been established to secure an annual reduction in this gap. Nor does Texas employ an accurate and reliable means for tracking demand over time. Absent such strategies, the current gap is expected to worsen.

Impact of Texas Interest Lists on Individuals with Disabilities

In Texas, the gap between present capacity and unmet needs means Texas does not operate its service system in a manner that ensures that individuals will receive services promptly. People in need must wait for the next available service opening or HCBS waiver slot and cannot count on getting assistance soon. While waiting — sometimes for years — their situation may deteriorate and caregivers experience exceptional burden under the stress of long-term unassisted caregiving.

Texas also requires individuals to enter an interest list for waiver programs with pre-defined services that individuals may or may not want. For example, if an individual is seeking supported employment services, but is only given a choice of day habilitation or sheltered work, the forced response would not reflect a person’s true preference. Likewise, if an individual wants supported apartment living but can only choose between ICFs/MR services or a community group home, then the forced choice would also be inaccurate. Thus, constructing interest lists may inadvertently allow the supply of services illustrated within their data gathering protocol to influence individual responses. The outcome is a skewed view of demand that reinforces expansion of the existing service supply without accounting for services individuals and families may truly be seeking.

Perhaps the most serious ramification is the fact that people are limited to receiving services in settings where there are openings rather than from providers that they prefer. This practice undermines individual choice. Openings may not be available near the individual’s home community, making it difficult for an individual to maintain ties with friends and family. People needing services are often unable to select a community service and may have to choose an ICF/MR or state school/center because it is available when they are having a crisis. Often in Texas the crisis is due to behavioral challenges that many other states manage effectively in their community service systems.

“We try to fit the individual to the program vs. fitting the program to the individual. Everyone is different.”

– Pat Munoz

Reliance on Large Congregate Care Facilities

Texas relies much more heavily on large congregate care facilities than most other states. The state continues to place children in state schools/centers and to rely on ICF/MR service options, even within services used to support smaller groups of people. While Texas is taking some action to alter this pattern, the impact is small and the pace of change is slow.

Texas State Mental Retardation - Facility Locations - Lubbock State School, Denton State School, El Paso State Center, San Angelo State School, Abilene State School, Mexia State School, Lufkin State School, Austin State School, Brenham State School, San Antonio State School, Richmond State School, Corpus Christi State School, Rio Grande State Center

Texas operates 13 state schools/centers across the state. These facilities include sites in: Abilene, Austin, Brenham, Corpus Christi, Denton, El Paso, Harlingen (Rio Grande), Lubbock, Lufkin, Mexia, Richmond, San Angelo and San Antonio.

Chart 2: Number of People Living in State Schools/Center from 1982-2006 in Texas

Texas has relocated many individuals from state schools/centers into community alternatives, reducing the population of state-operated facilities from 7,933 in 1989 to 4,924 in 2006. Yet, Texas has been considerably slower at reducing the use of state schools/centers when compared to national trends. Since 1989, Texas reduced the census in large state facilities by only 32.6 percent compared to a 53.9 percent reduction in census nationally.

Texas operates 13 state schools/centers across the state. These facilities include sites in: Abilene, Austin, Brenham, Corpus Christi, Denton, El Paso, Harlingen (Rio Grande), Lubbock, Lufkin, Mexia, Richmond, San Angelo and San Antonio.

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006.

Chart 3: Admissions and Discharges of Texas State School/Center Population in 2006

As can be seen in Chart 3, the state school/center population decreased by 78 people in 2006. However, when comparing only admissions and discharges (not including deaths) there was a net increase of 55 people. The chart also shows that all 13 state schools/centers still actively admit individuals. In 2006, Mexia State School had the largest admission of 58 people, but also the largest discharge of 64 people.

Admissions and Discharges of Texas State School/Center Population    in 2006   Chart 3      Total Admissions: 263   Total Discharges (discharges + deaths): 341   Net Change: Decrease in population of 78 people   R. Prouty, G. Smith, C. Lakin. (2007). Residential Services    for Persons with Developmental Disabilities: Status and Trends Through 2006

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006.

Chart 4: Percentage of Individuals by Setting Size

Chart 4 shows that the state generally funds a bi-modal residential system. In 2006, most people receiving residential services lived in housing options of 1-6 people (14,623 individuals), or in facilities housing 16 or more people (6,414). Relatively few people (682) lived in intermediate-size residences of 7-15 people.

Percentage of Individuals by Setting Size   Chart4      1 to 6   7 to 15   16+   Texas Residential Facility Size in 2006   US Residential Facility Size in 2006   R. Prouty, G. Smith, C. Lakin (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006.

Based on the figures in Chart 4, Texas serves about the same percentage of individuals as other states in residences of 1-6 people (67 percent in Texas versus 71 percent nationally). However, in Texas, about 29.5 percent receiving residential services are in facilities serving more than 16 people, compared to 15.3 percent nationally (see Chart 5).

Chart 5

Percentage of Individuals Living in Large Settings (16+) Compared    to Total Population Served      Chart 5   TX - 29.5%   US - 15.3%   R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006.

Texas closed two state schools in 1996. Despite this, there were 263 new admissions into state schools/centers in 2006, in addition to 208 discharges and 133 deaths, yielding an overall modest census reduction of only 78 people.

Texas continues to devote a greater share of its Medicaid dollars to large congregate care services than is typical nationwide and the cost of supporting a person in a state school/center was almost twice the cost of supporting a person in other types of ICFs/MR.

Chart 6

2006 Expenditures Per Person in Texas   Chart 6      State Schools/Centers - $89,790   ICF/MR (Not State Schools/Centers) - $49,364   HCBS - $33,685   Texas Home Living (TxHmL) - $8,669

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006.

Placements of Children into State Schools/Centers

The population of children in state schools/centers has remained virtually constant since 1994 (see Chart 7). In 2006, roughly five percent of the residents in state schools were children, ages 0-21. This amounts to 246 children in state schools/centers.

Chart 7: New Admissions to State Schools in Texas and the United States (2006)

New Admissions to State Schools in Texas and the United States (2006) Chart 7 Children under age 21 in Texas - 43%   In United States - 21.7%.

In 2006, 43 percent (114 out of 263) of new admissions into Texas state schools/centers were children under the age of 21. This is twice the national average of 21.7 percent.

Chart 8: Admissions into State Schools/Centers by Age and Level of Need in Texas

As shown by Chart 8, many of these children have none to moderate levels of need.

Admissions into State Schools/Centers by Age and Level of Need in Texas Chart 8 Age: 0-14; 15-21; 0-21 None/Mild/Moderate Severe/Profound All Levels

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006.

Due to recent increases in state school/center admissions involving children, DADS established a workgroup to investigate the current intake of new children into state schools/centers and the current discharge rate. The workgroup found that in fiscal year 2007, 152 children/youth ages 0-21 were admitted into state schools, while only 12 individuals moved out of state schools and into community settings.

The Texas Legislature has taken some action by passing Senate Bill 368 (77th Texas Legislature, 2001) that requires all individuals under the age of 22 who reside at a state school/center to be placed on an Interest List for community waiver support. The provision is meant to expedite the placement of children out of state run schools/centers. Yet, children are limited by the number of waivers that are available. Furthermore, by allowing children to be admitted into the state schools/centers, the state continues to replenish the population making it almost impossible to transition away from the state’s reliance on large congregate facilities.

Serving Individuals with Complex Needs in the Community

In Texas there is a tendency to support those with more significant disabilities in ICF/MR settings. However, as shown in Table 3, the percentage of people with a Limited Level of Need (LON) served in ICFs/MR is roughly equivalent to the percentage served in waivers (44.8 percent ICFs/MR to 42.9 percent in waivers).

Table 3: Individuals Served by Service Type and Their Level of Need

Table 3

Source: DADS response to questions posed by the House Select Committee for Individuals Eligible of Intermediate Care Facility Services; April 25, 2008; Attachment 11

Text alternative for Table 3: Individuals Served by Service Type and Their Level of Need

The national trend is to rely more heavily on HCBS options for individuals of all levels of need, including those with significant support needs. In fact, by 2009, nine states plus the District of Columbia will not have any state operated residential institutions for people with developmental disabilities.

Chart 9: Individuals Living in ICFs/MR as a Percentage of the Total Individuals in Residential Facilities

Individuals Living in ICFs/MR as a Percentage of the Total Individuals in Residential Facilities   Chart 9 Texas US 1991, 1994, 1996, 1998, 2000, 2002, 2004, 2006 Percentage of People in ICF/MR

R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2006.

The national trend to transition away from ICFs/MR gained momentum in the 1990s once waiver use became more common. Yet Texas has not kept pace with this national trend (Chart 10). Many states have come to rely almost entirely on HCBS services and very little on ICFs/MR. In 2006, nationally, 83 percent of those served in developmental disability systems participated in an HCBS waiver program, compared to only 54.7 percent in Texas. In 2007, 6,608 individuals lived in ICFs/MR; a small change from the 6,649 individuals in 1987[9. Texas Department of Aging and Disability Services. (April 25, 2008). Letter of Response to 02/15/2008 House Select Committee on Services for Individuals Eligible for Intermediate Care Facility Services.].

Chart 10 (below) shows an important trend in spending for services. In past years, total spending nationally for ICFs/MR facilities has been greater than spending for home and community based services (HCBS). However, around the year 2000, this national trend changed. As seen in the first graph (A), the amount of funds spent on HCBS waiver services nationwide met and then exceeded the amount spent on ICF/MR services. Yet as the second graph (B) shows, Texas has not made this fundamental shift in the manner in which individuals receive needed services. As of 2006, the amount spent on ICF/MR facilities in Texas remains significantly higher than the amount spent on HCBS services.

Chart 10: ICF/MR vs. HCBS Waiver Spending in the U.S. and Texas

Billions of 2006 Dollars HCBS Waivers ICF/MR Fiscal Year 1972-2006

United States (A)

 

Millions of 2006 Dollars HCBS Waiver ICF/MR Fiscal Year 1972-2006

Texas (B)

Source: Braddock, D., State of the States in Developmental Disabilities, 2008.

It is not known what the future will hold — it is up to policymakers to determine if this current funding trend will change and follow the pattern seen across the nation or whether Texas will continue to invest so heavily in ICFs/MR.

Summary

By all measures, Texas relies more heavily on state schools/centers and privately-operated ICFs/MR to serve individuals with complex needs than most other states. In spite of actions to decrease such reliance, stronger actions have been taken that maintain and expand the state’s investment in ICF/MR options, including:

  • The slow pace of relocations from state schools.
  • Sustained admissions of children into state schools at a pace twice the national average.
  • The addition of 1,690 positions to the state school infrastructure in FY 2008-2009.

This pattern ultimately results in individuals not being served in the most integrated setting possible. Moreover, the continued strong investment in state school and community ICF/MR service structure expends resources that might be invested in more integrated community options, weakening the community system and its potential for serving a wider range of individuals.

Footnotes