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Recommendations to Rebalance the Long-Term Services and Supports System

2008 Texas Biennial Disability Report

2008 Texas Biennial Disability Report

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:

  1. 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 bodies[12. State Auditor’s Office (July 2008) An Audit Report on State Mental Retardation Facilities, the Department of Aging and Disability Services, and the Department of Family and Protective Services State Auditors Report Number 08-039; and Department of Justice (December 2006) report that identifies civil rights violations at Lubbock State School (no longer available online.];
  2. find it increasingly difficult to accommodate new applicants for services so that interest lists will continue to grow; and
  3. 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.

  1. 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.

    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.

  1. 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 families[13. Health and Human Services System, (2008). Strategic Plan 2009-13. Chapter VI, 162.]. 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.

    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.

  2. 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.

  3. 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.

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

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).

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:

  1. 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.

  2. 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.

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.

  1. 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.

  2. 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. Texas Department of Aging and Disability Services. (June 2008) Stakeholder Recommendations to Improve Recruitment, Retention, and the Perceived Status of Paraprofessional Direct Service Workers in Texas (PDF, 44 pages). Texas Direct Service Workforce Initiative. Accessed October 2008.]

    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.

    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.

    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.

    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.

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.

  1. 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.”

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.

Footnotes