- TCDD Recommendations for Systems Change
- Recommendations: Fiscal and Programmatic Barriers to Consumer Friendly Services
- Recommendations: Progress Toward Individualized Service Delivery Based on Functional Needs
- Recommendations: Progress in Development of Local Cross-Disability Access Structure
- Recommendations: Projection of Future Long-Term Care Service Needs
- Recommendations: Consumer Satisfaction and Consumer Preferences
TCDD Recommendations for Systems Change
While some improvements have been made during the past biennium, there are several key areas in which the 81st Texas Legislature must take action. The following section outlines TCDD recommendations.
Recommendations: 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. Texas presently has no comprehensive, long-range plan for closing the gap between system capacity and service demand. While principles supporting community-based services are cited in the Health and Human Services Strategic Plan (2009-2013), no specific actions are identified. The Texas Legislature should direct efforts to reduce its over-reliance on state schools/centers, to better manage the interest list, and to increase community spending. Specific components of this 10-year plan are outlined in the special focus area on rebalancing the long-term services and supports system.
Require regulated health insurance policies to provide coverage for mental and behavioral disorders for children and adults equal to coverage for other medical conditions. Persons with mental disorders generally do not have equal access to health insurance. Many health plans limit mental health and substance abuse services. Texas has enacted laws that require insurance parity only for a small set of specified diagnoses or serious mental illnesses (schizophrenia, bipolar disorder, and/or major depression), but these requirements have not included other conditions such as fetal alcohol spectrum disorder (FASD). These laws discriminate against children and adults whose illnesses can be as disabling as those specified in statute, but do not fit neatly within the statute’s diagnosis or current criteria.
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. Wages play a critical role in determining workforce adequacy and the quality of services received. In addition to receiving relatively low wages, workers typically lack access to affordable benefits, receive minimal training, and are often employed on variable, part-time schedules. These factors can result in shortages of direct-care workers, high turnover rates, lack of qualified staff, inadequate backup for sick and vacation time, and difficulty retaining workers.
3.2 Create a hierarchical structure of reimbursement rates that recognizes case mix, complexity of care, family supports, and individual needs. Not all individuals with disabilities need the same level of care. The reimbursement rates for community care services should recognize case mix, complexity of care, and other caregiver supports available, based upon an appropriate assessment tool. The 80th Legislature took a very important step towards this goal by authorizing a higher nursing rate for clients with ventilators and/or tracheotomies, but similar distinctions need to be made for other services, particularly attendant care and behavioral supports.
3.3 Adjust reimbursement mechanisms to provide incentives for providers to implement innovative approaches to service delivery to improve quality and cost effectiveness. Consider setting rates per month or per diem to allow for options other than hourly direct service delivery to meet client needs. Funding should be provided to encourage providers to explore and implement innovations related to technology, tele-health, phone monitoring, case management fees, etc.
Recommendations: 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. DADS’ documentation often does not include information about the individuals’ awareness of available community living options, nor the types of supports needed in a community program that may not currently be available. This information is critical given that 70 percent of state school residents who “preferred an alternative living arrangement” were not provided one.[11. 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.]
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. MRAs conduct intake and furnish service coordination including assisting individuals and families in developing service plans. As a lead agency in the community service system, MRAs are the most appropriate agency to provide information on community living arrangements to individuals. Recently, the Legislature directed the MRAs to provide community living options information to residents of state schools/centers. This resource needs to be extended to residents of community ICFs/MR as well. Funding should be provided to MRAs to cover the cost of these activities.
4.3 Expand “transition assistance services” for consumers in all HCBS waivers, including the HCS waiver program. Transition Assistance Services (TAS) assist Medicaid recipients who are nursing facility residents to set up a household when they are discharged from the facility. Eligible waiver programs include Community-Based Alternatives (CBA), Community Living Assistance and Support Services (CLASS), Medically Dependent Children (MDC), Deaf Blind with Multiple Disabilities (DBMD) and Consolidated Waiver. TAS services are currently not available to those transitioning from state schools/centers or ICFs/MR or those going into the Home and Community based Services (HCS) waiver and should be expanded and made available to these individuals.
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. Respite care provides a caregiver temporary relief from the responsibilities of caring for individuals with chronic physical or mental disabilities. Respite programs are a lifeline for families, yet these services are often unavailable in the community where families need them. As a result, many are forced to rely on institutional settings for respite support which is often an undesirable choice and can be disruptive to the individual with a disability. Funding should be allocated to strengthen the community based respite service system to better support informal caregivers. Policy changes should also be made to allow respite services to be available to all parents, siblings, and loved ones who provide care — not just for those over age 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 DADS to collect and analyze data that identifies factors driving admissions to state schools (particularly children) and report those findings to the Legislature. Information obtained on children and other individuals with I/DD at the time of admission to a state school is collected and maintained by the individual facility. As a result, there is no statewide information on the factors that lead to the admission such as medical or family crisis. State data indicates that almost half of individuals with complex needs are currently served in the community. If DADS collected and maintained admission information, state leaders could better evaluate the specific factors precipitating a crisis leading to placement, identify possible community supports, and avoid unnecessary institutionalization.
Recommendations: 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. Gaps in the community infrastructure often include the lack of skilled providers, rate structures that fail to reimburse costs for the services, limited availability of services, and providers that are unwilling to develop programs due to liability issues.
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. Supports for individuals with challenging behaviors are often not available through community programs, creating an unnecessary reliance on state schools to provide these specialized services.
7.3 Build capacity and fund the community mental health and substance abuse supports network to deter unnecessary placements in hospitals and nursing facilities. The 80th Texas Legislature (2007) allocated $82 million in new funds for community mental health crisis to reduce the number of people who are admitted to emergency rooms, jails, and state hospitals. Additional funds should be allocated to strengthen the community infrastructure to serve individuals in the most integrated setting.
7.4 Increase the number of waiver slots authorized for children aging out of Child Protective Services custody. Many children are being unnecessarily placed in institutions when no other option is available when they “age out” of CPS conservatorship at age 18 and have a continued need for residential services. Priority has been given to provide community options to children aging out of Child Protective Services, however this opportunity is only offered if the waiver slots are available. Additional allocation of home and community based waivers set aside for these individuals are needed.
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. Individuals who have disabilities due to conditions such as fetal alcohol spectrum disorders, traumatic or acquired brain injuries, autism, and others often find they are unable to successfully access the supports they need in the community. There are no appropriate placements for individuals who require 24-hour supervision since facilities are designed for individuals with cognitive disabilities (IQ less than 70) or those requiring nursing care. There are no Medicaid waiver services for individuals who were injured as adults, who do not have a medical condition requiring skilled nursing and who are able to live in the community with supports. Many are inappropriately institutionalized in nursing homes, generally contrary to the intent of the L.C. and E.W. v. Olmstead Supreme Court Decision. Modification of the eligibility requirements and service array of Medicaid waivers would allow individuals with these functional needs to be more appropriately served.
Expand services and community living options for youth with disabilities transitioning from education settings to post-education activities. Youth with a disability who are transitioning into post-schooling activities, services for adults, or community living should have the opportunity and necessary supports, to seek individualized, competitive employment in the community. The “Plan for Improving Employment Services for Texas Youth with Disabilities Who are Transitioning to Community Living,” directed by the 80th Texas Legislature (R)(2007) includes recommendations to remove existing barriers and to build a more comprehensive, coordinated system of employment supports and services for youth with disabilities as they make choices about their work and career.
Direct 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. Improved communication between HHS departments is critical in serving individuals in a more efficient manner. This involves cross-training of staff on developmental disabilities, cross-referral of individuals to improve access to the right service at the right time, and innovative technologies to facilitate the sharing of information. In 2006, DFPS and DSHS worked to share information about people with a mental health diagnosis who also experienced abuse, neglect, and exploitation to identify problem areas and identify opportunities for change. DFPS and DADS have assembled a workgroup to identify crossover cases. Such collaborative practices should become usual business across the human service enterprise.
- 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. Texas has made significant progress in recent years to improve the state Medicaid system. Demonstration projects that promote managed care, integrated care management, as well as modifications to the TIERS eligibility system are a few examples. While individuals with developmental disabilities are not the current target population for these demonstration projects, this population does rely heavily on Medicaid services and supports. As policy changes continue, leaders must ensure that the system changes will not negatively impact the ability of individuals with developmental disabilities to access needed services.
Recommendations: 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. In the past two Legislative sessions (79th, 2005) and (80th, 2007), leaders have allocated additional funds for waiver services through programs such as HCS. This year’s target for HCS enrollment was 1338. As of August 1, 2008, 1259 individuals have been enrolled. Of those, 646 have chosen a foster care model, 484 have chosen “own home/family home” and only 129 have chosen a group home/residential setting. This translates to approximately 90 percent who have selected a non-residential model. This information was collected for the most recent waiver expansion; however, this data is not collected on a systematic basis across all waivers. A formal study will develop a stronger understanding of the demand and choice for services in our state which is critical in accurately planning and financing the future long-term service and supports system in Texas.
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. The average age of an adult with a developmental disability living with parents age 60 and older is 38 years. Many family caregivers will age beyond the capacity to provide care in the next 10 to 20 years. Long waiting lists for home and community-based residential services make it difficult for persons with developmental disabilities who lose their family caregiver to maintain their independence and be active members of their communities. Resources are needed to ensure that these individuals are able to remain in their homes and age in place. Persons who are aging with developmental disabilities have unique long-term care planning needs. In addition to planning for their own aging in terms of finances, housing, and health care, many may find themselves in a position of seeking public services for the first time. Specialized assistance must be developed to help families with these unique planning needs.
Recommendations: 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. Consumer Directed Services (CDS) and Shared Responsibility Option (SRO) are vehicles of self-determination for people with disabilities which allow increased control over the services and supports individuals receive and how those services are delivered. The 2008 Texas Health and Human Services System customer satisfaction survey data indicate that many DADS respondents would like to hire, train, and manage the people who are paid to help them. Similarly, the 2006 National Core Indicators Customer Survey and the Participant Experience Survey results indicate that most CLASS CDS respondents reported feeling that they had control over how they spent their money, feeling safe in their home, feeling satisfied with their personal life, and being independent of guardianship. Participation in CDS is low in both fee-for-service and managed care (STAR+PLUS) areas of the state, with the exception of the CLASS program where 41 percent of service recipients are participating in CDS.
Transfer the responsibility for quality monitoring of state mental retardation facilities (SMRFs) from DADS to an entity with more administrative autonomy. In a report published in July of 2008, the State Auditors Office cited gaps in the investigation of complaints and incidents involving state school residents. Approximately 41 percent of priority complaints were not investigated within the required 14 days. Furthermore, state schools are both monitored and evaluated by the Department of Aging and Disability Services (DADS) which operates the facilities. Changes should be made to the oversight system to ensure that incidents are investigated properly, that state schools/centers who do not meet safety standards receive appropriate consequences, and that potential conflicts of interest are reduced.
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. The use of self-advocates who are independent of the service delivery system (functioning similar to ombudsman) is an essential function to improve the quality of care received. Approximately 60 percent of state school residents do not have guardians or others who can voice an opinion or communicate their interests. Peer advocates have experiences similar to those they assist which can increase trust and reliability. Self-advocates serve to provide individual support, peer-to-peer counseling, and education on issues such as preventing and reporting abuse and neglect, understanding community living options, and exercising self-determination.
- 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. Individuals receiving services should be at the table when decisions are made regarding the supports they receive. Appropriate funding must be provided within service programs (e.g., long-term care, employment, transportation, etc.) to allow individuals with disabilities to attend task force and committee meetings and participate in the planning process.