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Allocation of Resources to Provide Long-Term Services and Supports for Texans with Developmental Disabilities

As previously discussed, Texas has invested heavily in services for people with intellectual and developmental disabilities (I/DD) over the past 30-40 years. Yet, even as the state built a community services system, it has maintained an enduring commitment to ICFs/MR facilities including the state school/center network. With a growing unmet demand for services, changing expectations among people with I/DD and their families, chronic under-funding and other factors, Texas faces difficult policy choices in responding to the needs of its citizens. There is great opportunity to reduce the gaps between current system performance in serving persons with disabilities and performance that meets national benchmarks for capacity and quality.

Texas Current Performance

A gap analysis compares an enterprise's actual performance to its potential or desired performance — an assessment of the distance between what an enterprise is currently doing and what it could do in the future. The gap analysis begins with defining key expectations for desired system performance. These expectations, or benchmarks, serve as the basis for appraising current performance. A primary and overarching goal in Texas is that everyone supported by the system has a quality service.

TCDD engaged the Health Services Research Institute (HSRI) to conduct an external analysis of how Texas is doing relative to three fundamental, top-level performance bench­marks which were used to gauge the provision of publicly-funded services and supports for people with mental retardation and related conditions. These benchmarks were derived from HSRI's nationally recognized work in developing quality assurance indicators (i.e., the "Quality Framework" for the Centers for Medicare and Medicaid Services, and the National Core Indicators utilized by over 30 states including Texas). The complete Gap Analysis, Action Steps, and Implementation Strategies can be found on TCDD's Web site at www.txddc.state.tx.us/public_policy/news.asp#gap. A summary of HSRI's assessment of Texas follows:

Benchmark 1: People with mental retardation and related conditions have access to and receive necessary publicly-funded services and supports with reasonable promptness.

Assessment: People with MR/RC in Texas do not have access to services with reasonable promptness. Texas significantly and chronically underfunds its service system, resulting in significant numbers of people who do not receive the supports they need. This is evident in the service utilization rates in Texas that are far below the national average. Insufficient funding also weakens the system's overall capacity to support the most vulnerable individuals such as those with complex medical needs or behavioral challenges, within the community.

Benchmark 2: Services and supports are provided in the most integrated setting appropriate to the needs of the individual.

Assessment: Many people with intellectual and developmental disabilities (I/DD) do not receive services within the least restrictive setting appropriate to their needs. By all measures, Texas relies more heavily on state schools/centers and privately-operated ICFs/MR than most other states. In fact, the discrepancy in Texas' investment in institutions compared to its investment in community services is extraordinary. Texas ranks seventh highest in the nation in its percentage of people with developmental disabilities living in residential facilities with 16 or more beds. While there have been actions taken to decrease this reliance, stronger actions have been taken to maintain its investment in ICFs/MR options. The pace of relocations from state schools is modest at best. Meanwhile, the state admits children into state schools at a pace twice the national average. And, in FY 2008-2009, the state added 1,690 positions to the state school structure at a cost of approximately $1.04 million.

Benchmark 3: The system must promote economy and efficiency in the delivery of services and supports.

Assessment: The state's service system for people with developmental disabilities is not operated in a manner that promotes efficiency and economy. Texas' average spending per citizen for MR/RC services was 47 percent below the national average in 2006. Texas continues to devote a greater share of its Medicaid dollars to large congregate care services than is typical nationwide. Furthermore, there presently are no actions underway to reformulate payments to ensure that they are adequate.

 

The initial examination of information regarding Texas' current system led to the following observation:

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Given the present fiscal effort and how these funds are applied, the state's system is ill-positioned to address the present and future needs of its citizens with intellectual and developmental disabilities.

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In response, fundamental system redesign is necessary for Texas to improve its performance in supporting its citizens with intellectual and developmental disabilities. Absent redesign, system performance will not change appreciably, and will likely deteriorate over time. System redesign is a complex, challenging endeavor, especially in large service delivery systems like the one in Texas.

Policy Options

Moving forward state leaders have several policy options to consider. For instance, the state may:

• Do nothing. Keeping the current investment patterns and service array in place will most likely result in more of the same — i.e., continued inefficient use of resources, a community system that cannot easily meet local service needs, and a growing unmet demand for services.
• Increase funding significantly, but maintain the current system of organizing and delivering services. This approach might help at the margins, but it would tend to perpetuate present inefficiencies, even if most of the new money were to be directed at community systems. Overall, fewer people will be served than might otherwise be the case.
• Keep funding relatively level, but de-emphasize the use of ICFs/MR services in favor of HCBS financing options. The transition itself will require funding, but afterwards the state may drive down its "per participant cost" due to increased reliance on lower cost options. Under this approach, there may be marginal impact on unmet service demand. State leaders, however, must take into account the fact that the present overall fiscal effort is already well under the national average.
• Increase funding significantly and de-emphasize the use of ICFs/MR services in favor of HCBS funding options. This is the most forward-looking option. It would provide a pathway toward increased efficiency within the system while providing needed funds to strengthen the community system and systematically address unmet service demand. Further, it would place the state on a firmer footing in developing a system that can better address present needs while systematically reducing the interest list for services.

The following recommendations are related to the fourth option. TCDD concurs that Texas can take several steps to rebalance its MR/RC system and make significant progress in serving people in the most integrated setting, expanding system capacity, and strengthening existing community services in the next 10 years.

Tyler Sparks

Read his family's story

 

Recommendations to Rebalance the Long-Term Services and Supports System

It is important to note that the following recommendations are based on practices and policies that have been successfully implemented in other states. By not taking these steps, policymakers can expect that the state will: (a) continue spending substantial sums to maintain large facilities, such as the state schools/centers, that provide services that individuals with disabilities say they do not want, and that have been criticized by federal and state over­sight bodies¹²; (b) find it increasingly difficult to accommodate new applicants for services so that interest lists will continue to grow; and (c) continue to oversee a community system that is continuously challenged to address the needs of people already receiving services. Forestalling action will likely make action later more costly and difficult to undertake. The time to act is now.

Serving People in the Most Integrated Setting

Texas can significantly improve opportunities for people to receive services and supports in the most integrated setting. It is entirely feasible for Texas to reduce the number of people served at the state schools/centers and not just meet nationwide norms for the operation of such facilities, but exceed the averages by meeting a significant portion of demand for services. A decision to move in this direction would require relatively modest annual levels of transition from state schools/centers. Additional action steps have been outlined that would contribute to rebalancing ICFs/MR and HCBS services and move Texas toward a system where all individuals have greater freedom to live in the most integrated setting.

18. Reduce the number of people served at state schools/centers. It is TCDD's position that individuals with developmental disabilities do not belong in institutional settings and must have access to the full range of accommodations necessary to ensure that living in their natural community is possible. The fact that most other states rely far less than Texas on such facilities should serve as a signal that Texas' practice of maintaining its present state schools/centers capacity is outdated. As in other states, community providers in Texas have the ability to provide quality services and supports to individuals with the most challenging support needs. However, Texas has not developed the capacity to meet those demands and therefore relies on state schools/centers to meet those needs.

In 2006, Texas served 67 percent more individuals at its state schools/centers than the nationwide norm for utilization of such facilities. The Texas utilization rate for state schools/centers services was 21 individuals per 100,000 persons in the general population; the nationwide utilization rate was 12.8. Today, Texas is still using state schools/centers at a rate significantly higher than the nationwide norm (19.8 individuals per 100,000 persons in the general population).

18.1 During the 2008-2018 period, the state school/center population should be reduced to 1,465 individuals to simply meet the projected nationwide norm. While TCDD advocates that the total state school/center population be reduced to zero as quickly as possible, we recognize that achieving this goal will take significant commitment and effort over time. Based on Texas population growth estimates during the next 10-year period, reaching a census of 1,465 would entail a reduction of state school/center population of a little over 3,444 people or a net reduction of approximately 265 people per year. This translates into placing about 22 individuals each month into appropriate community settings. These projections confirm that this is a feasible goal in the short-term to move Texas towards its long-term goal of community living for all individuals with developmental disabilities.

As shown in the charts presented earlier in this report, Texas state schools/centers presently command a disproportionate share of Texas' MR/RC budget. The per person costs of supporting people in state schools/centers will continue to move upward in order to maintain compliance with federal requirements. Reducing the number of people served at state schools/centers and operating a smaller number of beds in such facilities is not only feasible but also a strategy central to avoiding the disproportionate drain such facilities place on the state's budget.

18.2 Concurrently and effectively address the major problems that affect community services to reduce pressures to admit people to the state schools/centers. HSRI comments that the persistence of the operation of large facilities in many states is explained in part by material shortcomings in the capabilities of community service systems, especially the capacity to serve individuals requiring extensive behavioral supports or those with complex, chronic medical needs. Ultimately, community placements will be more durable and stable to the extent that they are individualized and planned carefully.

 

 

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Olive Family: Missy & Thomas (Mac)

Missy and
Thomas "Mac" Olive

Missy Olive is the oldest of five children and has had guardianship of her 29-year-old brother, Thomas "Mac" Olive, since he was 18. "I thought I knew everything and I wanted to give my parents a break," Missy said. She has a doctoral degree in educational psychology and works at The University of Texas at Austin. Mac is diagnosed with autism, profound mental retardation, mild cerebral palsy and a seizure disorder. They moved to Texas in 2000, and Mac has been on the waiting list since then. He is currently number 2,100.

Missy and Mac previously lived in Nevada and Tennessee where Mac received personal attendant and respite care hours. They were able to live together while Missy worked and went to school. When she was offered a job at UT-Austin, they moved to Texas and were surprised that Mac had to be placed on a waiting list. Since they lost attendant care, Missy placed Mac into a community ICF/MR group home where he lived for six years.

Missy reports that Mac suffered numerous injuries while under the care of the group home, and she was often not notified of these incidents. Missy attributes the problems to the high rate of staff turnover. She filed numerous complaints and says nothing was done. The provider forced Mac out of the community ICF/MR, and there was no place for him to go.

With no community support and no other choice, Mac had to move to Austin State School or else he would have no services at all and Missy would have to quit her job. "We could have remained as a family if we had waiver services," she stated.

"I want (legislators) to know that if I was given just 25 percent of the cost of placing Mac in a State School, I could have him at home living with me," Missy disclosed. "Our state has not only caused Mac physical harm due to the multiple injuries he suffered while living in an ICF/MR, they forced Mac to move out of my house. There is no family choice."

Her biggest challenge, she said is the stress she feels when Mac cries every time she takes him back to the State School after spending time at her home. "I never know if they're going to give him his meds properly, if he going to the bathroom or if they will know if he is hurt."

Missy recognizes that "There is a convenience to state schools because doctors are right there, they can do blood draws, etc., but," she said, "I am not sure if we should be using tax dollars for convenience."

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Other States

The majority of other states have significantly reduced or eliminated their utilization of very large state-operated facilities. The Coleman Institute (2008) shows that by 2010 a total of 140 state-operated institutions will have closed since 1970. By 2009, there will be nine states and the District of Columbia that will not operate large facilities. These states includes: Alaska, Hawaii, Maine, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, and West Virginia. Other states are approaching this standard, with 11 more states having fewer than 200 people living in large state facilities. The steps being taken in New Jersey to systematically reduce the number of persons served in its seven state developmental centers as part of the state's Olmstead initiative offers an example of how to develop a long-range strategy for reducing a state's reliance on large, multi-purpose state institutions.

19. Cease admissions of children to state schools/centers. In 2006, 43 percent (114 out of 263) of admissions into Texas state schools/centers were children. This was twice the national average of 21.7 percent. Further, a workgroup established by DADS to investigate youth admissions found that 152 children/youth ages 0-21 were admitted into state schools in FY 2007, while only 12 individuals moved out of state schools and into community settings. If Texas is to move away from its reliance on state schools, it must take firm action to eliminate further admissions of children and youth to state school facilities.
    
    DADS has supported the principle that children belong home with their families¹³. Yet services are not available to keep families intact, but are evidently available to support out-of-home institutional placement. A DADS workgroup on the topic identified several pressures that combined to encourage increased admittance of children to the state schools, including: (a) reductions in community-based services due to cuts in funding to Mental Retardation Authorities; (b) lack of timely available appropriate alternatives; (c) lack of comprehensive and readily available supports for families of children with challenging behavior or co-occurring mental health diagnoses; (d) forensic/court-ordered placement; and (e) parental choice given the alternatives available.

Kris Valera

Read his family's story

 

To establish a "Family First" strategy, DADS should:

19.1 Provide resources to bolster in-home support services for children living at home with families. Children in critical or emergency need of services should not have to endure long wait lists that place their families in crisis.

19.2 Take affirmative action to accommodate all children under the age of 22 who are in state schools/centers and seek community placement. This includes children on the Interest List for community placement resulting from Senate Bill 368 that was passed during the 77th Texas Legislature (2001).

19.3 Adopt a standardized risk assessment protocol that will be employed systemwide to identify potential risks and risk mitigation strategies as part of the individual service plan development process. Several states (e.g., Oregon and Massachusetts) have developed such protocols and integrated them into their service plan development processes. An appropriate protocol should be selected during FY 2009 and introduced into the service plan development process starting FY 2010.

19.4 Develop a "diversion" protocol triggered by the risk assessment that systematically implements alternatives to out-of-home placement of children in the state schools or community ICFs/MR. This may include placement with another family, or secondarily placement in an alternative community residence. Placement in state schools must be considered a last alternative after all others are exhausted.

Other States

In 2006, 21 of 41 states (51 percent) with large state operated facilities had no children under age 15 living in such facilities. (Note that the remaining nine states have no state institutions.) At 5 percent, Texas had the eighth highest percentage of children under age 15 living in large state facilities. Clearly, most other states have taken action to promote in-home or family support over placing children in institutions.

 

 

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Noel Family: LaChandra, Mia, Ashley & Aaliyah

LaChandra, twins Mia and Ashley and sister Aaliyah

At 21-years-old, LaChandra Noel was a bright, beautiful young woman with her whole life ahead of her. She was in college working on a criminal justice degree, modeling and on her way to the Miss America pageant. Then, in an instant, everything changed. At five and a half months pregnant, she was hospitalized and discovered that her twins, Ashley and Mia, had a condition known as cytomeglo virus. The virus left Ashley with severe mental, physical and medical impairments. She is unable to walk, feed or dress herself and has no communication skills. Mia was affected by the virus later on in her life and, over time, has lost a great deal of her hearing.

LaChandra's husband began physically and psychologically abusing her. But, where does a mother who is expecting her third child and already has twins, one of whom has severe disabilities, go when her life is threatened? Initially, she moved in with her mother, but her husband continued to threaten her and physically attacked her. She filed charges against him and moved to a battered women's shelter. The shelter was not set up for a family of four and particularly not for a child with a disability.

After the twins were born, LaChandra received social security benefits and, as required, she turned in her pay check stubs. It was not until a year later that LaChandra discovered that the benefits counselor had provided inaccurate information about required income thresholds. As a result, she had been overpaid and was required to pay back an entire year's worth of benefits. She had to quit her job so she wouldn't lose her Medicaid coverage for Ashley.

In 2006, while living in another shelter, Ashley's name came up on the Medically Dependent Children Program (MDCP) waiting list. It took two months before anyone came to interview her and assess Ashley's eligibility. During the visit, however, not only was LaChandra told she may not receive services because she was homeless, the service coordinator forgot to bring the nurse to conduct the assessment.

Finding a "real" home seemed out of reach at this time and Ashley was hospitalized due to illness, so LaChandra felt her only option was to place Ashley in a nursing facility. For the next two and a half months, she called every nursing facility on the list, but to no avail. During this time, she found a place for her family to live, but enrollment in MDCP was still pending with hopes of services ever starting beginning to fade. In fact, they never got MDCP services.

"Legislators need to know how important the Medicaid waiver programs are and that they need to be tailored to suit a family's needs," LaChandra said. "They can look good on paper, but not work in the community."

Then, in January 2007, LaChandra was notified that Ashley's name came up on the Community Living Assistance and Support Services (CLASS) waiting list. By June, she was reenrolled and receiving services. She chose the Consumer Directed Services (CDS) option. Now that Ashley has the services she needs and the family has a home they can call their own, their longing for security and stability has been realized. Moreover, LaChandra, whose goals were put on hold many years ago, has since returned to work and is four classes away from graduating from college.

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20. Develop the "Money Follows the Person" initiatives to accommodate a stronger transition of people living in ICFs/MR who prefer to receive services in the most integrated setting. Once a person is placed in an ICF/MR, it is difficult for the individual to secure an alternative living arrangement primarily because ICFs/MR funding is not easily portable and cannot follow the person into the HCBS waiver. As a consequence, individuals often have little choice but to remain in ICFs/MR until their turn comes up on the waiver interest list – currently many years. This circumstance is at odds with the basic tenets of the U.S. Supreme Court's Olmstead decision. Texas was one of the first states to utilize the "Money Follows the Person" (MFP) concept. This policy has allowed for individuals residing in institutional settings to relocate back to a community setting and utilize that funding to receive community-based services.
    
    For people with developmental disabilities, the original Promoting Independence Plan gave priority to relocation to individuals living in large ICFs/MR settings. However, relocation opportunity is only effective as long as there is new funding and/or attrition. From 1999 to 2007, 1,073 people moved from the state school/center system. Likewise, 734 more have moved from large ICFs/MR to HCS waiver programs. However, the 6,000 or more individuals residing in smaller community ICFs/MR should also have opportunities to transition to HCS waiver living alternatives as well. Texas has expressed a commitment to having children living in their community with their families. Funding to support this commitment should be demonstrated by extending permanent budget transfers through MFP for children as well.
    
    To avoid forcing individuals who want to transition from ICFs/MR from competing with other individuals for limited HCBS waiver openings, Texas should set aside or reserve waiver slots to accommodate individuals who want to transition out of ICFs/MR. Texas also should provide additional funding to cover the business expenses that facilitate the transition of individuals from ICFs/MR to alternative community living arrangements.
    
    Texas should build on its historical commitment to MFP by taking the following five actions:

20.1 Utilize MFP to keep children out of institutions and to provide opportunities for children to leave institutional settings in favor of HCS alternatives. Texas has expressed a commitment to having children live in their community with their families. Funding to back this commitment, however, has been insufficient. Often, children cannot access the waiver services that meet their needs. Assuring that children have meaningful opportunities to relocate in the community will require additional appropriations.

20.2 Expand opportunities within MFP for people to transition to HCS Medicaid waiver alternatives. This will require firm policy direction and appropriations to provide individuals with meaningful opportunities to transition. Such action is consistent with Senate Bill 27 (80th Legislature, 2007) to strengthen the process used to educate individuals about relocation opportunities.

 

20.3 Expand opportunities for relocation of people with MR/RC living in smaller ICFs/MR of eight beds or fewer. Current emphasis focuses on larger ICFs/MR of nine or more beds. A mainstay of the Texas system, however, includes over 6,000 people living in smaller community ICFs/MR. These individuals should have opportunities to transition to HCS funded living alternatives as well.

20.4 Implement activities to educate individuals who are eligible for MR/RC services and their families about the choices they have for relocating from ICFs/MR. The processes of permanency planning and the Community Living Options Information Process (CLOIP) should be expanded to ensure that individuals and families have the resources they need to transition to the community if they so choose. Mental Retardation Authorities (MRAs) are well positioned in the community to provide such information.

21. Adopt policies to encourage ICFs/MR providers to transition to supporting individuals in the most integrated setting. Texas must pursue strategies to rebalance its MR/RC service system in collaboration with the organizations that operate community ICFs/MR. In addition to MFP initiatives, DADS has been working with some organizations that are interested in converting their large facilities (seven beds and greater) to HCBS community living arrangements. These efforts should be expanded to include facilities serving six or fewer residents.

21.1 Promote incentives to encourage administrators of both large and small ICFs/MR to voluntarily close their facilities and to allow individuals to relocate to HCS waiver alternatives. This action is consistent with DADS' Money Follows the Person Rebalancing Demonstration. This demonstration is focused on providers of community ICFs/MR with nine beds or more to assist those providers to take these beds off-line.

21.2 Starting in 2009, DADS should dedicate staff positions to work directly with agencies interested in conversion.

21.3 Appropriate funds to provide conversion grants of up to $100,000 to agencies that submit promising proposals to support their development of downsizing/conversion plans.

Other States

Louisiana is working with the operators of large, private ICFs/MR to facilitate the conversion of several facilities to smaller living arrangements. Over the years, Minnesota has also worked collaboratively with ICFs/MR providers to downsize and, ultimately, close their facilities.

Expanding system capacity

Texas faces a major strategic challenge: keeping pace with the rising demand for MR/RC services, while simultaneously adding new capacity. There already is a substantial shortfall in Texas' current system to meet the expressed demand for MR/RC services. In June 2008 there were 79,925 people on Interest Lists in 2008, of which 37,187 are on the HCS Interest List.

 

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Texas falls significantly below the national average in the number of individuals served and the dollars spent per person.

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HSRI defines total service demand as the sum of "met" or "satisfied" demand (i.e., people who are receiving services) and "expressed but unmet demand" (i.e., people who seek services and have emergency or critical unmet needs). It is difficult to pinpoint year-over-year service demand trends in Texas. Texas has a fast-growing population that is difficult to predict accurately due to uncertainty over migration patterns. The U.S. Census Bureau projects that the Texas population will increase by 59.8 percent by 2030, or at 1.99 percent per annum.

There is considerable evidence from other states that the demand for MR/RC services is growing at a rate that significantly exceeds the rate of general population growth. For our purposes, it is assumed that the rate of demand for MR/RC services in Texas will grow at a pace somewhat faster than state population alone. HSRI analysis suggests a rate of two percent each year above the rate of population growth as a relatively conservative assumption.

Based on these figures, HSRI offers two calculations:

• The difference in 2006 between the number per 100,000 in population that Texas serves (i.e., 109 people per 100,000) and the number it would serve per 100,000 if it were to serve the people at a level commensurate to the national average (i.e., 193 people per 100,000); and
• The service penetration rate Texas would have to reach in order to address, based on the experiences of other states, most, if not all, expressed demand for MR/RC services (250 persons enrolled in services per 100,000 in the general population).

 

 

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Johnson Family: Kim, Chad & Blake

Kim and Blake Johnson

"When I first got home, I felt more like a nurse than a mom," Kim Johnson explained, talking about her experiences in taking her son, Blake, home after he spent the first 14 months of his life in the hospital. Blake was born premature weighing 1 pound 6 ounces, was blind and had numerous surgeries for heart and lung problems.

While he was in the hospital, they received Medicaid due to Blake's low birth weight. Once he gained enough weight, the threat of losing his Medicaid coverage was eminent. Medicaid coverage continued for awhile because of his blindness, but he lost it when he was sent home from the hospital.

Quitting her job in order to care for her son, Kim has waited for services for 3 ½ years. "I would be working if I didn't have a disabled child," she said. "No daycare will take a child that is so medically fragile."

Life on a Medicaid waiting list is not easy, and the difficulties are numerous. Kim and her husband have to financially balance the deductibles on their private health insurance and the co-payments with the services Blake so greatly needs. They make daily decisions such as weighing the need for a swallow study or whether to wait another year so they can put their resources toward the cost of physical or speech therapy. Their insurance only covers 20 visits per year, per discipline.

Early intervention is essential for children born with severe physical and medical issues because there are often delays in their development. People on the waiting list frequently go without the care and services they know would greatly improve the quality of their lives.

"People need to get off the waiting lists earlier," Kim said, "so they can get the therapies, home modifications, and equipment they need for their children sooner."

Even with supportive family and friends, life can be very isolating while waiting for the Medicaid waiver program. Despite all of their struggles, Kim reports that "Blake has changed our entire family. We don't take things for granted, and we look at life in a different way. He has been such a good thing for us, and we're so lucky to have him."

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There is no doubt that additional dollars will be needed for Texas to address current unmet service demand as well as keep pace with projected additional demand through 2018. Federal Medicaid dollars currently can underwrite 59.44 percent of these additional outlays. To estimate the total dollars that might be necessary, HSRI offers three funding scenarios. Each scenario assumes that Texas will employ Medicaid financing to expand system capacity. These scenarios are:

• Current service mix. Unmet service demand would be addressed by expanding system capacity in about the same proportion as the present mix of services. This scenario employs the 2006 average per person cost of serving a person in Texas ($50,336 per person).
• HCBS Expansion Only. If Texas would rely exclusively on expanding its HCBS waiver to address current unmet and future service demand going forward, the baseline figure would be $33,685 per person (the average HCBS expenditure of 2006).
• ICFs/MR Services Only. Under this scenario, only ICFs/MR services are used. In 2006 the average cost was $70,404 per person.

Overall, it would be substantially more economical for Texas to address service demand by relying exclusively on HCBS waiver services to finance the expansion. In addition to the overall cost comparisons offered above, DADS data indicates that HCS residential services averaged $52,663 annually in FY 2006 compared to average annual costs for 8-person or less ICFs/MR of $54,924. Given these findings, two specific recommendations are made so that by 2018 Texas has sufficient system capacity to meet projected service demand:

22. Starting in 2009, enroll a minimum of 4,604 additional individuals each year in HCBS waivers for individuals with I/DD increasing the 2006 capacity of 13,999 persons to approximately 64,085 individuals by 2018. In order to accommodate most, if not all, of the unmet demand, Texas should expand system capacity at a steady pace by serving a minimum of an additional 4,604 people each year between 2009 and 2018 in HCBS waivers for individuals with I/DD. Such action would result in another 46,040 individuals receiving services by 2018. By employing the HCBS waiver to finance this expansion in capacity, Texas will be able to secure federal Medicaid dollars to underwrite 59.44 percent of the cost of this expansion.
    
    Such action would increase the number of HCBS waiver enrollees from the 2006 capacity of 13,999 persons to serve approximately 64,085 individuals by 2018. Increasing the size of its waiver program would provide Texas with a HCBS waiver capacity relative to the size of its state population – the capacity other states already possess. In 2018, Texas would be serving 250 individuals with mental retardation and related conditions in its waiver programs for every 100,000 persons in the general population – the estimated utilization rate needed to become "above average" and meet most, if not all, expressed service demand.

 

23. Expand home-based services as the primary tool for addressing service demand, including consideration of expanding the Texas Home Living (TxHmL) HCBS "supports" waiver. Another important national development is a reduction in the use of 24/7 "comprehensive" residential services in favor of services that complement rather than substitute for family caregiver and other supports that are available for individuals with developmental disabilities. Comprehensive residential services are very costly to deliver, whether in an ICF/MR or another type of community residence. Home-based services have proven to be an effective, economical means to support individuals with I/DD in Texas. Families have expressed a high level of satisfaction with home-based services.
    
    23.1 Enlarge the current Texas Home Living (TxHmL) HCBS waiver program. Focusing on home-based services is a less costly strategy than expanding licensed residential services. Currently, there are 18 states that operate separate "supports waivers" that provide roughly the same type of services as Texas' home-based services. Supports waiver programs do not offer residential services and are characterized by a relatively low dollar cap on the total amount of HCBS services that may be authorized on behalf of a beneficiary.
    
    23.2 Expand TxHmL to include a broader array of services and a more robust level of services. Expanding the number of TxHmL "slots" alone is not sufficient. Broadening the array of supports services would: (a) assure that the state's waiver operations are consistent with Olmstead, and (b) reduce budgetary risks for the state by enrolling some individuals into a supports waiver that can apply per person caps, as opposed to a comprehensive waiver with no such limits. Consideration should also be given to incorporating full-featured self-direction of home-based services, including adding the coverage of "individual goods and services" to provide an extra measure of flexibility for individuals and families to purchase non-traditional services and supports.

 

 

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Harmon Family: Connie, John & Grandson Kris

Connie and John Harmon
with grandson Kris Valera

The Harmons are a mix of cultures, generations and family structure that don't meet the typical norms of a family caring for a child with a disability. Connie and John Harmon live in Sugar Land. They are in their 60s and thought they'd be retired and living comfortably by now.

They adopted a little girl when she was just 6 days old. At the age of 15 years old, their adoptive daughter gave birth to son Kris, who has autism. Unfortunately, she was unable to care for Kris, and the Harmons have had custody of him since he was 18 months old.

For the first 10 years of Kris' life, he had severe behavioral issues. He had tantrums every hour that would last up to 15 minutes per episode. Connie had to apply restraints on a daily basis just to control his outbursts. He hit and physically abused her for years. Managing Kris' behavioral episodes has taken a toll on Connie's health. She has high blood pressure, four torn disks in her back and chronic chest pains. As Kris frequently ran off, she had to carry him almost everywhere for the first eight years of his life, resulting in a significant deterioration of her spine.

The Harmons have spent thousands of dollars out of their own pockets to care for Kris while they waited for services. They spent $1,000 a month for eight years on attendant services and $3,000 a month for more than 47 medications he took until they found the right combination for him to be able to function and live his life.

Like many other families who are caring for a child with a disability, the Harmons had no support available to them. In fact, Connie was not able "to build relationships with other people" or even go to church, an activity that was very important to her. Caring for Kris also alienated her from the rest of her family and resulted in suffering of her other children and grandchildren. The Harmons have sacrificed their spiritual, physical and mental health, as well as their financial security. They both work 12-15 hours a day to replenish the funds they have used caring for Kris.

They considered institutionalizing Kris because they were so emotionally and physically drained. Connie states, "We almost turned him over to the State as I couldn't hold on. The thought of doing this almost put me in a mental hospital." When Connie discussed this with her case manger, the Texana Mental Retardation Authority (MRA) offered them a Texas Home Living (TxHmL) slot to provide some relief as she got a few hours a week of respite. With the support of TxHmL, the Harmons decided against institutional placement.

After nine years on the waiting list, Kris' name came up for Home and Community-Based Services (HCS) services. He now has an attendant whom Connie calls a "life skills coach" to teach him daily living skills and ensure his participation in the community.

Connie explains that she had "given up everything in (her) life so Kris could have one." His enrollment in HCS has allowed her to return to the life she once had. She now has "time to take care of errands, pay bills" and, more importantly, "attend church."

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Strengthening Existing Community Services

The infrastructure of Texas' community system in its present form may not fully support manageable but rapid system expansion and reconfiguration. If Texas is to implement these actions to rebalance the system, it is vital that leaders create a solid platform for the delivery of community services going forward.

24. Develop a reliable and accurate means for tracking service demand and associated trends. Over the past several years Texas has gathered information on unmet service needs and compiled it in a series of "Interest Lists." Currently, the lists have grown to include nearly 80,000 individuals (unduplicated count). These lists, however, are troubled by a number of methodological flaws which make them difficult to interpret and likely drive individuals to sign up whether they presently need services or not. As a result, their utility for forecasting demand and reviewing associated trends is severely limited.
    
    From a strategic standpoint, the Interest Lists fail to provide state leaders with the information they need to systematically allocate available resources or to plan ahead to prepare for emerging demand preferences. In Texas, those who are on the Interest List are deemed as being "interested," but not necessarily eligible, for specific services. Further, agencies cannot determine if the individuals seeking services have MR/RC or meet functional and/or diagnostic eligibility requirements. Individuals seeking services are mixed together and reported in aggregate, and can be on multiple interest lists, yielding various duplicated and unduplicated counts for services. Individuals may seek to be placed on multiple lists, given the varying waiting times for service start up. Data are not gathered on an individual's "urgency of need" or the types of service they requested. Individuals instead are offered services generally on a "first come first serve" basis. Without more information, state leaders and advocates are virtually guessing at the accuracy of the lists and their implications for informing a reasoned systemic response.

To develop a more systematic view and response to meeting unmet needs going forward, Texas must establish a more structured means of gathering information on individuals facing critical or emergency need for services. Texas state leaders should undertake a review of other waiting list management systems and take action to establish a more reliable, accurate and useful means for collecting data on unmet service need.

Other States

Several other states have undertaken this task in recent years. For example, Pennsylvania and Illinois utilize the Prioritization of Urgency of Need for Services (PUNS) waiting list management system. PUNS classifies individuals based on an assessment of urgency of need and how soon services must be provided. It allows state staff to track what services are needed by urgency category. In addition, because uniform demographic information is gathered about each individual and their family caregivers (e.g., age), the data set also reveals other information useful to planners. HSRI advises that the PUNS is not necessarily the recommended choice – there are also other useful state systems that could be reviewed.

 

 

25. Strengthen the infrastructure to underpin the state community service system. If Texas is to be successful in reducing the census in state schools, the state must ­commit to simultaneously strengthening its community services system. Taking such action will require state leaders to rethink and reinforce several community system elements. Key areas that need immediate action include workforce, service reimbursement rates, and a system that assures that individuals with complex needs are appropriately served.

 

Workforce

Community agencies often experience high worker turnover which can pose significant challenges in their ability to deliver quality care. In Texas, payments for community services have not been regularly adjusted annually to reflect changes in the "cost of doing business." As wages increase in the general labor market, community agencies encounter more and more difficulties in hiring and retaining competent workers. At present, there is little in the way of up-to-date, systematic information to gauge the extent to which community worker wages should be boosted so that community agencies can be reasonably competitive in the market place.

Three recommendations are offered to improve conditions for the community worker:

25.1 Increase payment rates for community agencies to catch up with underlying changes in the cost of doing business in Texas. A catch-up funding increase would reduce strains on community services and avoid further deterioration in wages.

25.2 Implement low-cost or no-cost workplace improvements to increase worker retention. While wages and benefits are a critical component of employment, there are other improvements that can be made that are low- or no-cost to the employer. These include flexible work schedules, realistic job previews, worker recognition, worker-consumer matches, a career ladder, networking and mentor opportunities.¹⁴

25.3 Initiate a comprehensive study of community wages and benefits in 2009 and target for completion during 2010. The study should examine current community wages and benefits in relationship to comparable positions in the general labor market. It also should examine the extent of local/regional variations in worker pay. The study should be designed so that it provides policymakers with reliable, concrete information concerning the extent to which community wages and benefits are (or are not) competitive. The study also should suggest how wages and benefits can be indexed going forward so that they can be kept in alignment and competitive with general labor market levels.

Other States

Wyoming undertook a comprehensive study of this type several years ago. The study revealed that community worker wages needed to be boosted by about 20 percent to be competitive with other employers. Based on this study, the Wyoming Legislature appropriated the necessary funds to increase wages; a follow-up study determined that the increase in wages resulted in a marked reduction in workforce turnover.

Reimbursement Rates

Wages, benefits, and services are ultimately tied to the amount the provider is reimbursed. It is not simply the total amount of the reimbursement, but how efficiently the service can be provided with the funds allocated.

Two recommendations are offered to improve reimbursement rates:

25.4 Implement a provider cost study to examine how funds are allocated by actual costs associated with providing service. This study would allow a provider to know how much is being allocated to specific services as well as look at factors such as per person costs. This type of study also allows a state to pair the information with a systemwide payment reimbursement study to better manage the money allocated for individuals.

25.5 Update and enhance the assessment of needs by replacing the Inventory for Client and Agency Planning (ICAP) tool with more current protocols such as the Supports Intensity Scale (SIS). The SIS was published in 2004 and is in use in 14 states. It is easy to align with individual plans of care and, in an increasing number of states, is being used as the basis for developing individual budgets or reimbursement levels for state waiver programs. Because the instrument is support needs based, it captures some of the natural supports that Texas does not need to pay for. It is a nationally normed tool structured around client interviews. SIS assessment results would be very useful in matching available waiver dollars to the individual community support needs of waiver-eligible individuals.

 

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LeMaster Family: Karen, Steve & Brandon

Steven, Brandon and Karen LeMaster
Karen and Steve LeMaster have been married for more than 25 years. Despite being encouraged every step of the way to separate their family for the sake of their son, they chose to stay together. Karen explains that staff at "The Social Security department in El Paso constantly told me to divorce my husband and quit my job. That way I could have everything I need for Brandon."

Their 16-year-old son Brandon is diagnosed with autism, Asperger's syndrome and obsessive compulsive disorder. They placed Brandon on the Home and Community-Based Services (HCS) waiting list when he was 3 years old, and it was 13 years before they received services.

During the 13 years spent on the waiting list, the family suffered severe financial strain and declared bankruptcy twice due to high medical bills and the inability to earn more money because of financial restrictions associated with the Medicaid eligibility requirements. When Brandon was five, Karen and Steve had to change their respective jobs to intentionally earn less money to reduce their salaries by $14,000 a year. This action resulted in a combined take home pay of $2,000 a month.

These job changes, coupled with Brandon's preexisting medical conditions, resulted in higher monthly premiums ($420 a month) for medical insurance. The LeMasters spend $500 a month in prescription and therapy co-payments for Brandon. They are not able to afford the co-payment for Steve's prescriptions related to his diabetes, so he goes without so that his son's needs are fully met. Steve states, "We're just trying to survive here."

Despite their personal sacrifices, the LeMasters frequently lose Brandon's Social Security and Medicaid due to earning as little as $12 over the monthly threshold. When this occurs, they stop all of Brandon's therapies since they cannot afford the expense. Karen states, "Dealing with the Social Security office has been the greatest stressor of our lives." They gave up Social Security benefits for Brandon for two years because they didn't have the energy to fight with them anymore. When they came off the waiting list, they had to re-apply for Social Security and Medicaid to qualify Brandon for waiver services.

Now that they have had HCS services for a year, the LeMasters both comment, "It is severely lacking." Brandon needs social skills and vocational training if he is to be pre­pared for community living, but the HCS program is not providing these essential services. Additionally, the HCS providers are unable to secure consistent staff coverage to meet Brandon's needs.

The LeMasters point out that "Brandon thought all his staff was leaving because they didn't like him." When he begins to bond with staff, they often leave to earn a higher rate of pay elsewhere, and Brandon loses yet another person in his life. At one point, he threatened suicide because this was so difficult for him to deal with; his parents got him into therapy.

Karen adds, "We're struggling to make a better life for our son; that's all. We've never been on a family vacation and the future is scary for us. It never stops for our family."

Steve and Karen both hope that Brandon will have the opportunity to live in his own home and receive the support services for job training and independent living. Brandon wants to graduate high school and college so he can become a crime scene investigator or a chef.

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Serving Individuals with Complex Needs

Texas presently lacks a well-structured capacity in the community to respond to the needs of individuals with complex needs. As a consequence, the state schools/centers become the provider of serving individuals whose needs cannot be met in the community due to their challenging conditions. This is one of the rationales for maintaining state schools/centers.

 

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So long as the capacity is not present in the community to address the needs of people with challenging conditions, Texas will face ongoing pressures to admit people to the state schools/centers.

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Two specific actions are suggested:

25.6 Contract with one or more organizations to furnish specialized behavioral services for individuals living at home on an as-needed basis for defined geographic regions. This would strengthen the community infrastructure to support individuals in their homes and community. DADS should conduct a pilot of behavioral support system during 2010. If the pilot to contract with organizations to provide community support for behavioral crisis is successful, this approach to furnishing services could be extended statewide starting in the 2011-2012 biennium.

25.7 Undertake an in-depth study of current system capabilities to meet the needs of individuals who have extensive medical support needs. Approximately half of individuals with complex needs in Texas are being served in the community. However, little is known about the effectiveness of the system in meeting the needs of individuals with extensive, chronic health-care needs in the community.

Other States

States that have closed their large public facilities or substantially reduced their capacity have had to confront the question of how to meet the needs of individuals whose challenging conditions would otherwise lead to institutionalization. Some of these states (e.g., Maine and Vermont) recognized that reducing institutionalization required the development of capacity in the community to respond quickly and expertly to the needs of individuals with challenging conditions. For example, Vermont sponsored the development of a statewide crisis intervention network that can respond to the needs of such individuals in a variety of ways. Establishing this crisis network cleared the way for Vermont to close its only public institution. Maine found itself caught in a revolving door situation, with individuals in crisis cycling into and out of its one remaining public institution. In response, Maine created capacity in the community to meet the needs of these persons. This enabled Maine to proceed with its closure of Pineland Center, its only large public institution.

 

 

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Yaemon Family: Karen & Lathom

Karen and Lathom Yaemon

While the Yaemons waited for Medicaid waiver services for seven years, they sought help from the school districts and private pay facilities around the state. Their 17-year-old son, Lathom, has been diagnosed with autism, Attention Deficit/Hyperactivity Disorder (ADHD), speech impairment and mild mental retardation. He has severe behavior problems which include biting, kicking, choking and destroying property. When Lathom was home, the family was in a constant state of crisis.

Lathom attended school in Dripping Springs, but as he got older, his behavior worsened. He was striking out 20-50 times a day, and the school staff were restraining him and putting him in time out where he spent most of his day. Since the school was unable to assist with his behavioral episodes, they removed him and placed him in a residential facility in 2002. But, they had to bring him home after nine days because they could no longer afford the $500 a day cost.

Lathom was enrolled in a private Applied Behavior Analysis (ABA) school in Houston, and Karen lived with her mom to provide oversight of Lathom's care. She was away from her husband and daughter who remained in Dripping Springs to tend to their family business. The lack of Medicaid services forced the family to live apart and cost them thousands of dollars.

After exhausting their financial resources and after seven years on the waiting list, Lathom reached number 657 on the HCS list. The family was faced with no other option but to place him in Austin State School. The lack of community Medicaid services was a significant gap, and there wasn't any resource available between the family and a State School placement.

The Yaemons worked with the team at the State School to develop a plan for getting Lathom's medications and behavior more manageable. After living at Austin State School for one year, Lathom received a community slot. He got an HCS placement and is now living in a Home and Community-Based Services (HCS) group home in Austin.

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Comprehensive 10-Year Plan to Rebalance the Long-Term Services and Supports System

System redesign is an exciting opportunity for Texas to commit itself to achieving excellence in service system performance. However, redesign also may generate concerns about the potential impacts on people with intellectual and developmental disabilities, their families, committed professionals, and other stakeholders. These concerns are entirely legitimate, and if not addressed can fuel strong resistance to system redesign.

26. Launch the redesign effort with executive and legislative branch sponsorship and pursue redesign through a collaborative process that engages people with intellectual and developmental disabilities and other appropriate stakeholders as primary constituents of the system. A Redesign Steering Committee, with decision making authority, should be appointed to lead the effort. The Steering Committee should be charged with helping state officials to push forward by working out implementation details and generating support for planned system changes. This Steering Committee should have its own budget to defray meeting and other expenses, including support for the meaningful participation of people with disabilities and families. The Steering Committee should have ongoing, independent staff support during the duration of the action period. The Steering Committee should be required to prepare periodic reports about its activities and these reports should be widely disseminated across all stakeholder groups. South Carolina has the authority to direct its health and human service commission to take specific action to implement rebalancing efforts. Committee members should also include individuals with developmental disabilities and their families to provide input into the design of the system in which they receive services.

 

Conclusion

Absent an aggressive, multi-year initiative to reduce and eliminate unmet emergency and critical unmet service demand, Texas will find itself confronting a widening gap between the capacity of the service system and service demand. Individuals and families will face longer and longer wait times before they can receive services. Moreover, it will be very difficult for Texas to reduce its over-reliance on large congregate care services so long as it is not fully meeting service demand in the community.

People with developmental disabilities nationally argue strongly for support systems that look decidedly different than the current service system in Texas. As articulated in the Alliance for Full Participation Action Agenda (Alliance for Full Participation, 2005):

"We [people with disabilities] do not belong in segregated institutions, sheltered workshops, special schools or nursing homes. Those places must close, to be replaced by houses, apartments and condos in regular neighborhoods, and neighborhood schools that have the tools they need to include us. We can all live, work and learn in the community."

 

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It is clear that Texas is at a crossroads. Today's state leaders must choose the path and set the course for action in the next five, 10, 20 years. Action will require risks, but the benefits for Texans with disabilities will be far greater. The time to act is now.

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