Long-Term Care Plan for Individuals with
Intellectual Disabilities and Related Conditions
June 30, 2016
Thank you for the opportunity to provide input regarding the proposed Long-Term Care Plan (LTCP) for Individuals with Intellectual Disabilities and Related Conditions (IDD). TCDD is established by federal law and is governed by 27 board members, 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. Without anything of substance to respond to, our input is limited a short list of items we would expect to see in both the plan and the upcoming Legislative Appropriations Request.
Interest List Reduction
The interest list reduction should continue to be prioritized. 109,413 unduplicated people are waiting for long-term services and supports. The Health and Human Services Commission (HHSC) must request interest list funds to ensure adequate progress, and truly fosters people’s ability to live in the least restrictive environment of their choice.
Community First Choice Outreach
HHSC must develop and implement an outreach strategy for Community First Choice (CFC), particularly when the interest lists for 1915 (c) waivers remain long. In contrast to the waivers, CFC is immediately available to anyone who meets the eligibility requirements. An outreach strategy that educates people on the content of the program, and reassures them that they will not lose their spot on the interest lists would result in eligible and interested individuals presenting themselves at the front door of the service system.
Expand Provider Qualifications
An inequity exists with regard to provider qualifications among people who use CFC. With the exception of people using Texas Home Living (TxHmL) and Home and Community-based Services (HCS), adult waiver participants are able to pay a member of their household to be their attendant. Expanding provider qualifications to allow adults equitable choice in who they want to employ as their attendant would make qualifications uniform across systems, as intended in the federal regulations.
Despite strong effort from advocacy and stakeholder groups last session, attendant wages remained unacceptably low. Groups campaigned for a $10 per hour minimum wage for community attendants, but the legislature only approved a 14¢ per hour increase—from $7.86 to $8.00. Rates should be increased to support a living wage for all direct support professionals. While we are speaking specifically to the system of services for persons with intellectual and developmental disabilities, the state must recognize that the broader system cannot be maintained without a strong direct support workforce. An adequate living wage is essential in combating turnover and attracting quality employees.
Meaningful Day Activities
The LTCP should prioritize supporting meaningful days for waiver participants that is not predicated on segregated day habilitation programs. Without question, day habilitation programs are segregated and facility-based. For too many people, these programs are a de facto waiver requirement.
Most people with disabilities report they would like to work. While employment assistance (aid in finding a job) and supported employment (support in keeping it) are available to all HCBS waiver participants, they are not being used. Fiscal Year 2015 billing data suggests less than 3% of the more than 30,000 people using HCS and Community Living Assistance and Support Services (CLASS) waiver programs had either of these services authorized in their individual plans of care. Texas is an Employment First state, and TCDD believes funding must be adjusted to reflect this.
If a person declines to be employed or requires employment assistance for an extended period of time, we suggest they be able to direct their day habilitation funds as follows:
- Up to four participants should have the opportunity to combine/pool their resources—including staff— to plan their own support for a meaningful day;
- HHSC should consider public-private partnerships to develop cross-system collaborations and innovative funding options so that people with disabilities have meaningful access to the same opportunities as their peers without disabilities including:
- Access to recreation and community centers,
- Adult learning,
- And volunteer opportunities that are truly based on individuals’ interest
Moving Community Living Options (CLO) from Providers to LIDDAs
Currently, the personnel of private medium and large intermediate care facilities (ICFs) are responsible for implementing the Community Living Options (CLO) process annually with residents age 22 years or older. There is a subset of individuals living in large private ICFs who repeatedly have been offered HCS, and have continually declined. Given that community living options are presented by the provider, it is unclear whether residents’ decisions are a function of who is offering the information or if it is a genuine preference. Moving the CLO process from the providers to the LIDDAs would standardize it across private and state-operated ICFs, control for conflict of interest, and could lead to more informed community living decisions. What’s more, as more people transition from ICFs to community based settings, the ICF beds should be taken offline to fund moving the function to the LIDDAs.
The large, state-operated ICFs had extensively documented struggles with successfully implementing the CLO process prior to moving it to the LIDDAs. It is reasonable to believe large, private ICFs may be experiencing similar difficulties. Standardizing CLO process requirements for people in medium and large ICFs may help create a more robust, successful community living options process for ICF residents.
Level of Need (LON) Improvements
Recent reports of discrepancies between LON assessments conducted by providers and the LON assigned by DADS indicates the need for a serious examination of the LON system. Improvements must be made in order to eliminate the uncertainty experienced by program participants and providers when conducting these assessments. DADS should take immediate action to address recently identified concerns as well as those listed in the LON Review Workgroup Stakeholder Report 2007 to guarantee the integrity of assessments.
Beyond discrepancy in assessments, there is a need for parity between medical and behavioral LON. Currently, people with complex behavioral health needs are able to get a designation of LON 9 (the highest) while individuals with high physical support needs are not. Steps must also be taken to make it easier for people with complex behavior support needs to get higher LONs, particularly when they first enter the program and may not have supporting history or documentation. Allowing people to receive more behavior support services through a higher LON after a major transition would be a major system improvement. At a time when parity between physical and behavioral health is becoming standard, the state should update and improve the LON system to reflect the most modern standard.
Before the final LTCP is completed, we would like to reiterate how important it is to clearly represent data to avoid confusion—especially for the public, who may not be familiar with historical trends and trajectories. For example, the Draft Long-range Plan Report for State Supported Living Centers (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%.
TCDD urges caution, as sometimes the data is presented in a way that can be misleading or confusing. Thus, when reporting any data the raw numbers (and institutional/community comparison, when applicable) are requested for context. 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.
Finally, the system overall continues to be severely underfunded. Texas ranks 49th in statewide per person community spending. The institutional and community-based systems exist together within the wider IDD system. We must continue to focus on building community capacity and the true cost of service provision in order to make serious system-wide improvements. Efforts to streamline and improve institutional services must be made in concert with investments to build community capacity.
Thank you for the opportunity to provide input on behalf of the Texas Council for Developmental Disabilities.
Public Policy Director