Over the past 30-40 years, Texas has invested heavily in services for people with intellectual and developmental disabilities. Yet, even as the state established a community services system, it has maintained an enduring commitment to Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR) including the state school/center network. The current system of long-term services and supports in Texas falls significantly behind other states in several key areas:
- Texas spends very little on Medicaid developmental disabilities services and provides services to fewer people than most states.
- Texas lags the nation, and nearly all comparison states, in the number of persons who receive Medicaid developmental disabilities services.
- Texas spends $69.07 per citizen on developmental disabilities services. Nationwide, on average, states spend $144.93 per citizen.
- Texas furnishes Medicaid developmental disabilities services to 109 persons per 100,000 population, compared to the national average of 193 – or 43.3 percent below the nationwide average.
- Texas employs its fiscal resources inefficiently.
- The Texas system emphasizes the use of more expensive services more frequently than other states.
- Texas spends a greater proportion of its Medicaid dollars on ICFs/MR compared to the national average.
- Texas and other states are seeing notable changes in the trends of where people choose to receive services, when they are allowed to choose.
- A higher percentage of individuals now prefer to receive services in the communities in which they live.
- The characteristics of individuals receiving services in ICF/MR settings are similar to those receiving home and community based waiver services: approximately 29 percent of individuals with Pervasive Level of Need (LON) are in waiver programs and 40 percent of individuals with Extensive LON are in waiver programs.
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.”
Texas faces difficult policy choices in responding to the needs of its citizens with intellectual and developmental disabilities. This circumstance is fueled by a growing unmet demand for services, changing expectations among people with developmental disabilities and their families, chronic under-funding and other factors.
The most pressing issue facing the Texas mental retardation and related conditions (MR/RC) service system is the lack of community capacity to meet current and future service demand. Texas lags considerably behind most states in terms of services offered to people with MR/RC. For example:
- New York, with a total population of about 4 million less than Texas (TX: 23.5M vs. NY: 19.3M) serves more than twice as many people through its developmental disabilities service system as Texas (NY: approximately 100,000 vs. TX: approximately 43,000).
- California, with a total population 60 percent greater than Texas (CA: 38.0M vs. TX: 23.5M) provides services to 220,000 children and adults with developmental disabilities, or five times as many as Texas.
The situation is exacerbated by the fact that Texas, for several decades, has been one of the fastest growing states, with no immediate end to this growth pattern in sight. According to the Texas State Data Center (The University of Texas, San Antonio), the population of Texas is likely to reach 25 million by 2010 and could reach 51.7 million by 2040. Given such growth, it will be an extraordinary challenge to address the backlog of unmet needs for long-term services while simultaneously keeping pace with population-driven growth in demand.
The Texas Council for Developmental Disabilities solicited an external analysis of the Texas service system to evaluate its performance against a series of three performance benchmarks:
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.
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.
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 suggests the following observation: Given the present fiscal effort and how these funds are applied, the state system is ill-positioned to address the present and future needs of its citizens with mental retardation and related conditions.
Moving forward, state leaders have several policy options to consider. For instance, Texas 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 Home and Community-Based Services (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.
While some progress has been made in recent years, the pace of change is slow. The following recommendations are offered to improve the service delivery system for persons with intellectual and developmental disabilities.
TCDD Recommendations for Systems Change
Fiscal and Programmatic Barriers to Consumer Friendly Services
Develop and implement a comprehensive plan to reduce the institutional bias in long-term services and support systems and redirect funds to community services infrastructure by 2018.
Require regulated health insurance policies to provide coverage for mental and behavioral disorders for children and adults equal to coverage for other medical conditions.
Address insufficiencies in provider reimbursements that impact the availability and quality of community support services. Specifically:
3.1 Increase rates and expand rate enhancements for community service providers to ensure that providers can recruit, train, and retain quality direct care staff and compete with other employers in the workplace.
3.2 Create a hierarchical structure of reimbursement rates that recognizes case mix, complexity of care, family supports, and individual needs.
3.3 Adjust reimbursement mechanisms to provide incentives for providers to implement innovative approaches to service delivery to improve quality and cost effectiveness.
Progress Toward Individualized Service Delivery Based on Functional Needs
Modify the Community Living Options Information Process (CLOIP) to ensure that residents of state schools who express interest in alternative living arrangements receive appropriate education about, and are able to access community options. Specifically:
4.1 Improve the required documentation of mandated discussions with residents regarding their options for community supports and services, as well as the documentation of the reasons for not providing community living arrangements when requested.
4.2 Require community ICFs/MR to utilize Mental Retardation Authorities (MRAs) to provide choice options to ICFs/MR residents. Provide funding to fully reimburse the MRA costs to ensure informed choices.
4.3 Expand “transition assistance services” for consumers in all HCBS waivers, including the Home and Community-Based Services (HCS) waiver program.
Invest in community respite alternatives to avoid reliance on state institutions for support, including an expansion of respite services to include caregivers under the age of 65.
Enhance the capacity of the community services infrastructure to better support individuals with complex needs. Specifically:
6.1 Remove barriers and create incentives for providers to provide services and supports to individuals with complex needs in the community.
6.2 Require the Department of Aging and Disability Services (DADS) to collect and analyze data that identifies factors driving admissions to state schools (particularly children) and report those findings to the Legislature.
Progress in Development of Local Cross-Disability Access Structure
Provide sufficient funds to ensure that the Community Safety Net of community support services has the capacity to meet the needs of all individuals with intellectual and developmental disabilities (I/DD). Specifically:
7.1 Build capacity and fund the Mental Retardation (MR) safety net services to support individuals with I/DD in the community.
7.2 Build capacity and fund the community infrastructure to support individuals with behavioral needs in order to reduce reliance on institutional settings for specialized services and support.
7.3 Build capacity and fund the community mental health and substance abuse supports network to deter unnecessary placements in hospitals and nursing facilities.
7.4 Increase the number of waiver slots authorized for children aging out of Child Protective Services custody.
Amend the eligibility requirements and service array of Medicaid waiver programs to serve individuals who have cognitive/emotional-behavioral/psychosocial disabilities with or without accompanying physical disabilities.
Expand services and community living options for youth with disabilities transitioning from education settings to post-education activities.
Direct the Health and Human Services Commission (HHSC) and its Departments (DADS, DARS, DFPS, DSHS) to develop the infrastructure to collect and share common information about individuals receiving services across access and intake systems at the state and local level.
Ensure that individuals with developmental disabilities, specifically children with special health care needs, are not negatively impacted in efforts to reform the Texas Medicaid system, expand managed care initiatives, and/or restructure the service eligibility infrastructure.
Projection of Future Long-Term Care Service Needs
Require a formal study in Texas to gather data on the types of services selected by individuals with disabilities when they are offered Medicaid waiver supports, and use this data to more efficiently fund future long-term supports based on consumer needs.
Develop specialized services and supports to allow individuals with developmental disabilities to age in place following the loss of a family caregiver. Assist individuals with developmental disabilities who are aging and their family caregivers in planning for their future long-term care needs.
Consumer Satisfaction and Consumer Preferences
Expand options for Self-Directed Services (CDS, SRO) in Medicaid and non-Medicaid programs (including waivers) that provide long-term services and supports, including fee-for-service and managed care programs (STAR+PLUS). Extend self-directed options to additional services beyond personal assistant services and respite services.
Transfer the responsibility for quality monitoring of state mental retardation facilities (SMRFs) from DADS to an entity with more administrative autonomy.
Explore quality-improvement strategies such as using self-advocates to provide peer support to consumers to increase safety, prevent abuse and neglect, and improve awareness of community living options.
Ensure participation of people with disabilities and family members on state and local level committees that make recommendations regarding policy and the development and implementation of service programs.
Recommendations on Rebalancing the System of Long-Term Care Services and Supports
Reduce the number of people served at state schools/centers.
18.1 During 2008-2018, the state school/center population should be reduced to 1,465 individuals to simply meet the projected nationwide norm.
18.2 Concurrently and effectively address the major problems that affect community services to reduce pressures to admit people to the state schools/centers.
Cease admissions of children to state schools/centers.
19.1 Provide resources to bolster in-home support services for children living at home with families.
19.2 Take affirmative action to accommodate all children under the age of 22 who are in state schools/centers and seek community placement.
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.
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.
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.
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.
20.2 Expand opportunities within MFP for people to transition to HCS Medicaid waiver alternatives.
20.3 Expand opportunities for relocation of people with MR/RC living in smaller ICFs/MR of eight beds or fewer.
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.
21.Adopt policies to encourage ICFs/MR providers to transition to supporting individuals in the most integrated setting.
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.
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.
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.
Expand home-based services as the primary tool for addressing service demand, including consideration of expanding the Texas Home Living (TxHmL) HCBS “supports” waiver.
23.1 Enlarge the current TxHmL waiver program.
23.2 Expand TxHmL to include a broader array of services and a more robust level of services.
Develop a reliable and accurate means for tracking service demand and associated trends.
- Strengthen the infrastructure to underpin the state community service system.
- 25.1 Increase payment rates for community agencies to catch up with underlying changes in the cost of doing business in Texas.
- 25.2 Implement low-cost or no-cost workplace improvements to increase worker retention.
- 25.3 Initiate a comprehensive study of community wages and benefits in 2009 and target for completion during 2010.
25.4 Implement a provider cost study to examine how funds are allocated by actual costs associated with providing service.
- 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).
Serving Individuals with Complex Needs
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.
25.7 Undertake an in-depth study of current system capabilities to meet the needs of individuals who have extensive medical support needs.
- 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.
TOPDD Recommendations for Addressing Fetal Alcohol Spectrum Disorders (FASD)
Increase services for awareness, prevention, and intervention for individuals at risk for FASD.
Develop and offer pre-service education and continuing education training for para-professionals and professionals in a wide range of disciplines.
Establish supervised living arrangements for adults affected by FASD.
Advocate recognition of FASD by Medicaid and insurance companies, so that all diagnostic and treatment work are reimbursable.
Support community services to assist families with children affected by FASD to remain in a stable and caring environment, i.e. home.