Department of Aging and Disability Services
Draft Long Range Plan for State Supported Living Centers
June 10, 2016
Thank you for the opportunity to provide input regarding the Department of Aging and Disability Services (DADS) Long Range Planning (LRP) Report for State Supported Living Centers (SSLCs). The Texas Council for Developmental Disabilities (TCDD) is established by federal law in the Developmental Disabilities Assistance and Bill of Rights Act and is governed by a 27-member board, appointed by the Governor, 60% of whom are individuals with developmental disabilities or family members of individuals with disabilities. TCDD’s purpose in law is to encourage policy change so that people with disabilities have opportunities to be fully included in their communities and exercise control over their own lives.
SSLC Peer Support Program
TCDD recommends the development and implementation of an SSLC Peer Support Program for SSLC residents by SSLC residents. In its 2015 report, the Office of the Independent Ombudsman (OIO) for SSLCs states that, since 2011, there has been a steady decline in residents able to identify their rights. Only 46% of residents were able to do so in their last report. The OIO reports that the most common violation of residents’ rights are staff-imposed restrictions to residents’ money, diet, movement and dental procedures.
An SSLC Peer Support Program would:
- Make SSLC residents more aware of the types and rates of restrictions that limit a resident’s quality and control of their life;
- Lead a renewed effort to educate and communicate to:
- Families and guardians:
- The basics of rights for their loved ones, and
- Their application to a person centered life; and
- Direct support staff the fundamentals and importance of residents’ rights; and
- Families and guardians:
- Provide accountability and aid in protecting resident rights.
A peer support program would build on the positive outcomes achieved at SSLCs by the Texas Advocates’ project, Self Advocate Voices are Engaged (SAVE), and provide SSLC residents with greater control over their own lives.
As the statewide SSLC census declines, it is important to clearly represent data to avoid confusion – especially for the public who may not be familiar with historic trends and trajectories. For example, the Draft LRP Report for SSLCs notes that the percentage of all SSLC residents with a mental health need increased from 59% in FY 2008 to 62% in FY 2016. The claim seems to indicate that there has been an increase in the number of people with a mental health need. Without the raw data, it is not clear to the public that the number of SSLC residents with a mental health need has actually decreased by more than 900 people, as a result of an overall census reduction of about 30%.
Presumably, a majority of the 900 people and their mental health needs are currently being supported in the community based long-term services and supports system. This finding is significant to the layperson concerned with balancing the needs of all people with intellectual and developmental disabilities (IDD) and the fiscal implications of propping up a system that becomes less desirable and less relevant to stakeholders with each budget cycle. From our perspective, the data is also indicative of a system that has appropriately transitioned people with mental health needs to more integrated settings where community services are meeting their needs. Thus, the raw data is needed to better communicate such findings.
TCDD urges caution, as sometimes the data is presented in a way that suggests people can only be supported in large institutions when there are exponentially more people with complex medical and behavioral health needs being successfully supported in community based settings. Thus, when reporting SSLC data, the raw numbers and community comparison are requested for context.
SSLC Business Plan Expansion
The Draft LRP Report for SSLCs identifies a plan to expand to a new, untested business model where people who have clearly chosen to receive community based services would spend their Medicaid acute and home and community based services waiver dollars at SSLCs to receive services that DADS and the Department of Justice (DOJ) report do not meet the agreed upon standard of care.
With recent directives by the Texas Legislature, evidence-based downsizing and rebalancing recommendations, as well as critical (and growing) staffing challenges have been ignored in favor of prioritizing unwarranted institutional expansion. The Draft LRP Report for SSLCs should address staffing issues in this new service delivery model. In the past, DADS has had to hire professional staff (e.g., occupational therapists, physical therapists, and BCBAs) on a contract basis, which is significantly more expensive than hiring for these positions using full-time equivalents. This new business model should not be based on hiring contract employees. To do so would increase staff turnover rates, further contributing to inconsistent service delivery for SSLC residents who are already receiving questionable care.
There is no evidence to suggest that this new business model will create a significant revenue stream to support continued SSLC operations or be welcomed by people with IDD as an appropriate addition to the community based long-term services and supports system. Network adequacy and other difficulties experienced by people using community based services under the state’s acute managed care expansion do not justify using the institutional system as a replacement when well-documented substandard quality and limited community inclusion remain critical factors.
The expansion plan is shortsighted and seems likely to exacerbate current challenges. The services identified for expansion:
- Have either been routinely cited as deficient (active treatment and specialized day programs),
- Have not yet been piloted (crisis stabilization services), or
- Are plagued by high turnover (psychology, dental).
TCDD recommends that a plan to expand institutional services be informed by substantial market research so that people with IDD have control over the defined demand and service offerings. If Texas moves forward with this expansion, TCDD recommends that:
- These new services should be physically located at the Local Intellectual and Developmental Disability Authorities (LIDDAs);
- SSLC staff should only be diverted to provide services to people in the community when the specific SSLC has achieved:
- A 95% fill rate for the specialty professional being made available, and
- Substantial compliance under the DOJ agreement for the service being made available;1
- Managed care organizations should receive monetary sanctions for not providing access to community based acute services to their members when a member can only receive such services at an institution;
- An independent review comparing community and institutional services should be provided for each SSLC service sold so that consumers of IDD services may make informed decisions about where to purchase services;
- The sections of the facility being used for community services should be required to meet accessibility standards under Americans with Disabilities Act; and
- Clinics located at SSLCs should be required to meet the same clinical, regulatory and building standards required for any new community based facility.
In response to the DOJ Settlement Agreement monitor recommendations, the Draft LRP Report for SSLCs includes plans for a variety of outsourcing contracts. Unfortunately, none of the outsourcing contracts are specific to developing an acceptable community living discharge planning process, as recommended by the DOJ Settlement Agreement monitors in their Four Year Report. The monitors affirmed that some transitions were significantly delayed and that some people who should have been recommended for transition were not. They further questioned the system’s capacity to adequately address the community living discharge planning process without outside consultants.
The SSLC system lacks the expertise associated with developing Quality Improvement (QI) programs, as DADS has had to enter into outsourcing contracts in order to provide them. While it can be helpful to bring in outside observers, we are concerned that the SSLC division has contracted with entities that may be lacking in subject-matter expertise. The long-term plan highlights a contract with the University of Florida’s Institute for Child Health Policy (ICHP) to develop a QI program – we fully support developing a QI program, but question whether ICHP is a good fit when only 2.5% of SSLC residents are children. Contracting with an institution that specializes in IDD services would likely result in a more applicable, appropriate QI design.
The apparent need to outsource behavioral health care is also a concern. The draft makes no other mention of concrete steps for improving access to such care beyond an outsourcing contract with Axis Point Health for coordinated care management. The Draft LRP Report for SSLCs mentions creating a crisis hotline, but there is not enough detail given. We recommend the registered nurses responsible for answering calls have demonstrated expertise in mental health services for people with IDD in order to assure appropriate, applicable information is provided.
Reported SSLC lead levels are alarming and we are concerned that DADS officials represent levels as “not that high.” We are pleased that the state has chosen to update their response beyond staff training as originally proposed to include SSLC resident blood testing.
However, since there appears to be a dispute about whether the levels are “high” and where the high lead levels are located at each of the facilities, we recommend a color coded map indicating the locations and levels of lead for each SSLC so that SSLC residents may make more informed decisions about whether to request transfer to another facility or less restrictive setting. We further recommend that because all institutional placements for children are to be considered temporary, that children’s Permanency Plans should be immediately reviewed and transfers to family based alternatives be prioritized.
The Draft LRP Report for SSLCs acknowledges many buildings are quite old and in a state of severe disrepair. Maintenance costs remain an area of concern. Considering reports of high lead levels at some SSLCs, it would be appropriate for this report to include background and corrective action plans specific to this important issue.
The Draft LRP Report for SSLCs acknowledges staff turnover remains a significant challenge. High turnover levels impact continuity of care and the ability to make improvements in all areas of SSLC operations. Increasing the caseload of professionals in high turnover areas is likely to contribute to further turnover, which negatively affects quality of care. Critical staffing challenges must be addressed and expanding caseloads with a business plan expansion is not the way to do it. The current hiring approach is also fragmented and outdated, and is likely contributing to hiring difficulties. Focus should be put on retaining current high-caliber employees, as it is more cost-effective and leads to higher quality of care.
The Draft LRP Report for SSLCs both anticipates continued census declines and a future need for beds due to an aging IDD population. While people with IDD are living longer, they and their families continue to work desperately to ensure the ability to age in place. The SSLC system should engage in other statewide efforts within DADS and the Health and Human Services Commission to address aging. Specifically, SSLCs could support the needs of aging Texans with IDD and their families by providing technical support regarding how to modify plans of care and developing resources and technical guidance for aging in place. The options are varied; once substantial compliance with the standard of care is achieved, behavioral health staff at SSLCs could provide training in positive behavior support for the community-based workforce, as well as for families. By focusing on helping people with IDD age in place in the community, SSLCs could also have the opportunity to become part of the community and foster inclusion. This could be achieved through innovations in community support, and realigning the system to act as a medium for community engagement rather than institutionalization.
A focus on promoting and maintaining independence and preparing for transition to the community does not detract from the ability to provide care for older individuals in the future – indeed, promoting community living will help to better prepare providers in the community to care for aging Texans with IDD in the future.
Consolidation and Closure
The Draft LRP Report for SSLCs should identify that Texas does not require 13 facilities for the number of people who choose to use them and plan for consolidation and closure accordingly. The report is careful to stress availability of a spectrum of care as a strength rather than the quality of said care. TCDD continues to support a moratorium on admissions and the Sunset Advisory Commission recommendations to reduce the SSLC infrastructure and rebalance the long-term services and supports system. The failure of Senate Bill 204 and inaction on the part of the Texas Legislature to address this unsustainable system belies substantial evidence that Texas must act to modernize the IDD service system and improve conditions at SSLCs.
Seven years into the DOJ Settlement Agreement, the system still lacks substantial compliance with about 70% of the provisions. The assumption that SSLC services will “continue to improve” is unfounded, as DOJ monitoring reports have continually illustrated a failure to reach or maintain compliance in nearly every domain of service delivery. Improving service delivery in order to promote independence and prepare residents for successful transitions to more independent and less restrictive living options should remain the priority. This plan seems to continue the practice of Texas living beyond its means; forgoing its responsibility to improve institutional services; and prioritizing an unwarranted institutional expansion when alternatives do exist.
Thank you for the opportunity to provide input on behalf of the Texas Council for Developmental Disabilities.
Public Policy Director
- It should be noted that the system would be better served by having any facility coming into substantial compliance provide technical support to noncompliant SSLCs. ↩