Public comment regarding the possible reform of long term services and supports for people with intellectual and developmental disabilities
Oct. 2, 2012
My name is Jessica Ramos public policy director for the Texas Council for Developmental Disabilities (TCDD). Thank you for the opportunity to provide input regarding the possible reform of long term services and supports (LTSS) for people with intellectual and developmental disabilities (IDD). I look forward to providing more detailed input regarding a plan to reform this system in advance of the session that convenes January 8.
Individuals with IDD have diverse service and support needs but share a commonality that those needs are life-long, often requiring a coordinated array of services. People with IDD have support needs that are not always predictable – any system redesign needs to incorporate considerable flexibility to support each individual as their needs change. The system needs to be responsive to individuals with unique, intense support needs such as those with Prader-Willis syndrome, those who are deaf-blind and have multiple other disabilities, people with traumatic brain injuries and others. Texas already has a tiered system of services and supports for individuals with intellectual and developmental disabilities. Though there are a number of strengths that should be preserved, there are opportunities for improvement. Fortunately, the system also has active stakeholders with a willingness to work with the state to build upon the system’s many successes.
In general, TCDD has been providing input in concert with other advocacy organizations for the last several years including recommendations to ensure that all people with IDD waiver services have access to strengths based person directed planning, both employment assistance and supported employment so we can de-emphasize the use of day habilitation, a Hospital Level of Care (HLOC) and/or medical Level of Need 9 waiver services, and psychiatric crisis services.
We believe a services system reform pilot should include the whole system that serves persons with IDD, including all institutions and all waivers for which persons with IDD are eligible. For significant cost efficiencies to be realized, the most expensive services (institutional services) must be included in the pilot. The HMA report did not identify significant cost savings associated with managed care for persons with IDD, and there is no indication that all eligible persons would be served in a managed care pilot as is the case for StarPlus recipients. If the intent is to serve more people, we recommend that the plan include savings projections and benchmarks for the number of additional people to be served.
TCDD recommends that the role of the local authority be maintained in any pilot. Local authorities are responsive to their local communities and have access to local resources. Without a central role for local authorities, the system’s ability to leverage local resources could be limited significantly. We believe the local authorities’ role in providing service coordination and advocating for HCS participants has been valuable and has resulted in increased quality for those individuals. Continuing to insert and remove local authorities from the system will only undermine the system’s stability.
The DADS LAR includes the Community First Choice Option as an exceptional item that would provide 11,902 persons with a combination habilitation and attendant care service via a managed care organization for $35.8 million in state general revenue. While we support adding an entitlement for people with IDD, we question whether the current funding proposal includes costs for all services needed for these individuals and strongly recommend that the agency recalculate the request in a manner that would ensure a stable and well-trained direct support workforce. We are concerned that the CFC option may become a benefit without needed access to services.
We are also concerned that managed care organizations are not ready to assist people with IDD as evidenced by their inability to communicate with this target group prior to the MRSA rollout and their inability to serve children with complex needs after that rollout. At recent hearings it became evident that the state appears to lack adequate contract oversight capabilities, and that standard definitions of medical necessity and long term care reporting requirements are not currently included in contracts. It is our understanding that other states have implemented greater mechanisms for transparency. We also have concerns about viewing a managed care model as a means of achieving greater cost-efficiencies. Adding reimbursements for MCOs would seem to further stretch an already underfunded system. TCDD does not support managed care pilots for LTSS for people with IDD unless it is clear that those individuals will receive all of the services and supports for which they are eligible in the arrangement. If implemented, the model should include an external advocacy component to ensure accountability and timely dispute resolution.
TCDD would support LTSS system reforms that reduce reliance on provider controlled housing and provide incentives that encourage consumer controlled housing. Such a system would empower people with IDD by ensuring that they have the support necessary to make informed choices about their housing options. There are a number of housing options that maximize independence and are affordable to people on SSI, including Section 8 Housing Choice Vouchers, the Project Access Program, and Section 811. State health and human service agencies are currently collaborating to ensure that people with disabilities have access to these important housing options and their input should be included in the reform options. TCDD supports housing options that are fully integrated in the community, in close proximity to goods and services and do not take the system backwards by perpetuating congregate living environments no matter how well intentioned. TCDD does not support including larger residential options in systems redesign, and we note that providers indicate the cost of retrofitting existing homes to accommodate more residents is generally cost prohibitive.
TCDD recommends that independent living, consumer direction, and employment are the first options offered in any reform proposed by DADS. TCDD strongly supports EveryChild’s recommendations regarding assessments and behavioral health services.
Finally, the system continues to be severely underfunded. Texas ranks 51st in statewide per person community spending. An honest dialogue about the true cost of reform is necessary to ensure the sound structure of a reformed system.
Thanks again for this opportunity for input. We look forward to continued dialogue as these discussions move forward.