Thank you for your leadership in the 87th Texas Legislature. The Arc of Texas looks forward to a productive interim that maintains the meaningful momentum you have generated for thoughtful policy deliberation.

As a statewide membership organization, The Arc of Texas promotes, protects, and advocates for the human rights and self-determination of more than a half-million Texans with intellectual and developmental disabilities (IDD). In collaboration with 27 local chapters across the state, we work with Texans with IDD and their families to identify barriers to and solutions for quality community services and supports, access to civil rights and criminal justice, competitive integrated employment, and inclusive education. 

With their input in mind, The Arc of Texas respectfully submits the following recommendations regarding this interim charge: 

Long-term Care Funding: Examine state investments in the long-term care system. Study nursing facility funding issues and the impact of the pandemic on capacity and delivery of care. Explore nursing facility quality metrics and recommend strategies to improve the sustainability of the long-term care workforce.

Recommendations for Long-Term Care Funding

We propose the following 11 solutions to improve investments in the long-term care system.

1. Fund Promoting Independence Waivers
2. Ensure Access to Nursing in HCBS
3. Address MDCP Nursing Facility Stay Requirement
4. Implement TEFRA Option
5. Adjust TxHmL Eligibility
6. Bring Back In Home and Family Supports
7. Allow Family Caregivers
8. Continue COVID-19 Flexibilities
9. Support Inflationary Adjustment
10. Elevate Direct Support Professionals
11. Establish an IDD Coordinating Council

Fund Promoting Independence Waivers

Community-based care costs far less than care provided in a nursing facility. To continue the success of Texas’ Promoting Independence Plan and Texas’ Permanency Planning and Family-Based Alternatives initiatives, continued funding of Medicaid waivers for children and adults to move from nursing facilities, group homes, large institutions, and General Residential Operations (GRO) licensed by the Department of Family and Protective Services (DFPS) is necessary. We urge the legislature to provide dedicated waivers for Texans either residing in institutions, including nursing facilities and state supported living centers (SSLCs), who want to move into the community or preventing institutionalization for those in crisis. The current attrition prioritization plan allows HHSC to meet the demand for crisis diversion for nursing facilities and state supported living centers and enroll more individuals in need of community-based services. However, attrition does not address interest list reduction or meet the demand for transitions from all institutions.

Ensure Access to Nursing in HCBS

Nursing is one of the most utilized and essential services among Home and Community Based Services (HCBS) waiver recipients and nursing shortages are causing significant issues for people with intellectual and developmental disabilities and their families. Simply put, people cannot find a nurse and their quality of life is suffering. Individuals are being forced back into institutions because they cannot find a nurse to meet their needs in the community. Families are missing work and pulling all-nighters because there is no one available to care for their loved ones. A key reason for this failure to ensure nursing so people with IDD can live in the least restrictive setting possible is that Texas has not created a sustainable rate structure to support community-based care. The Arc of Texas asks for the legislature to explore rate adjustments for complex needs across settings for all types of providers, identify options to amend all developmental disability waivers to allow billing of all nursing services and create additional billable nursing services, and identify opportunities to increase access to Nurse Family Partnership for children with developmental disabilities.

Address MDCP Nursing Facility Stay Requirement

The Medically Dependent Children Program (MDCP) waiver provides services to children with significant medical complexities as a cost-effective alternative to the institutionalization of children in nursing facilities. Many children in the waiver utilize life sustaining medical technology. MDCP services include respite, minor home modifications, adaptive aids, and flexible family supports. The individual cost of services is capped at less than 50% or less than half of what is paid to a nursing facility.

Unlike the STAR+PLUS HCBS waiver that allows adults who have SSI access to the waiver with no wait, children who have SSI and meet MDCP eligibility criteria cannot access waiver services until their names come to the top of the interest list. The wait for services is approximately two to three years.

If waiting is not feasible, the MDCP waiver allows children to leave nursing facilities and receive services and supports in their homes through a Money Follows the Person (MFP) process, but this process is inefficient and puts the lives of children at risk. To qualify for the Money Follows the Person process, the waiver requires a child to complete a 30-day stay in a nursing facility, unless the child is extremely medically fragile and is approved by a strictly defined medical fragility determination by HHSC to complete a limited stay. The limited stay requires a child to enter a nursing facility for part of two days. Children who qualify often require a ventilator to breathe, have tracheostomies, require oxygen, or have severely compromised immune systems. The need for access to a crisis diversion process for children with extreme medical fragility that does not require a child to be admitted to a nursing facility for part of two days was highlighted by the recent COVID-19 pandemic. Facilities that accept children for a limited stay were hard to find prior to the current public health emergency and is even harder now. Families and physicians of children who require ventilation to breathe and whose immune system and health are medically compromised are worried that admission to a congregate facility for even a short period of time puts children at greater risk of contracting COVID-19 and requiring further hospitalization.

Texas Medicaid has successfully created a crisis diversion process and reserved capacity in the Home and Community-Based Services (HCS) waiver for children and adults at risk of facility admission. HHSC needs legislative direction and funding from the legislature to create a similar diversion process in the MDCP waiver that does not require a medically fragile child to enter a nursing facility. Senate Bill 1207 from the 86th Texas Legislature set the stage but did not give HHSC sufficient direction or funding.

Implement TEFRA Option

Some children spend 13 years waiting for services on waiver interest lists. Families of these children often have little alternative other than to seek admission of their children to a costly institution. Funding for waivers was not appropriated in the amount requested for the biennium, leaving some children without access to the supports and services they need to live in a family.

The Tax Equity and Fiscal Responsibility Act (TEFRA) [Pub. L. 97-248, Sec. 134], passed by Congress in 1982, includes an option for states to create an additional pathway to Medicaid for children, birth to age 18. The TEFRA option allows family income to be disregarded for children who meet a certain criterion so that they qualify for Medicaid to cover the services they need to grow and thrive while living at home. To qualify, children must have a disability that is recognized under the definition utilized in the Supplemental Security Income (SSI) program of the Social Security Administration and must meet basic Medicaid and institutional level-of-care requirements. Additionally, their care must cost less at home than in an institution. Good health insurance often only covers a small portion of what children with disabilities need. This puts working families in a terrible predicament – especially when waiting on an HCBS waiver for years. Families can’t quit their jobs to get help. And they can’t help their kids without jobs. TEFRA would be such a huge help in assisting Texas families with the extraordinary cost of raising a child with a disability.

Adjust TxHmL Eligibility

Adjust eligibility of the Texas Home Living (TxHmL) waiver so that the lowest cost waiver can serve more people. The Texas Home Living waiver’s financial eligibility requirements are different from that which currently is used for the other HCBS waivers such as HCS, CLASS and DBMD. Requiring uniform financial eligibility requirements would apply more equity to the waivers. Considering individual income, rather than family income, would mean that children could be eligible for waiver services sooner, thus delaying crises and reducing or preventing unnecessary institutionalizations.

The TxHmL waiver program may force a choice between employment and remaining eligible for the program by requiring income eligibility based on a lower income level than most other HCBS programs. The TxHmL income limit is set at 100% of SSI rather than the institutional income limit of 300% SSI like the rest of the waivers.

The TxHmL waiver includes supported employment and employment assistance services, but people who use the services risk losing their waiver eligibility if they earn more than 100% of SSI. Increasing the income limit would allow this lower cost program with an overall cost cap of $17,000 annually to be used by individuals who could also work part time. While there may be tools available to assist a working person to remain in the TxHmL, they are not widely known and are often difficult to use. Raising the eligibility income threshold would provide equitable access to a base waiver for people with IDD.

Bring Back In Home and Family Supports 

In Texas there are more than 300,000 family caregivers, and it is estimated that only seven percent of those families receive support from a state IDD agency. The growing HCBS interest lists show us that individuals and families need more support. And just a little support could go a long way for most of the individuals and families I talk to. The Texas In Home and Family Support program provided up to $3,600 per year in direct grant benefits for individuals with intellectual disabilities and/or children over the age of 4 to choose and purchase services until 2003. The Texas In Home and Family Support program was very flexible and is tremendously missed. 

Allow Family Caregivers

In regard to the workforce crisis, we urge the state to broaden the base of qualified providers, including allowing family caregivers.

Continue COVID-19 Flexibilities

Continue to allow HCS and TxHmL recipients to live in the same home as their caregivers.

Support Inflationary Adjustment

Support measures that would provide an inflationary adjustment for the biennium. Without inflation relief, there is little hope providers will be able to increase the incredibly low wages of direct support professionals or community attendants. We must bring providers up to where they need to be.

Elevate Direct Support Professionals

Finally, the long term services and supports system in Texas would not exist without the workforce of direct support professionals (DSP). The workforce “crisis” for DSPs has been going on for so long, it is no longer a crisis but a systemic issue. This has been highlighted during COVID-19 were DSPs continued working and supporting individuals with disabilities despite a lack of personal protective equipment (PPE) or adequate sick leave. Without the work of DSPs individuals with disabilities may not be able to use the restroom, get out of bed, eat, or access their community. DSPs are the backbone of the Medicaid long terms services and supports system.

It is time for Texas to not only adequately fund wages of DSPs but elevate the status of this important profession. We need to recognize the value of their work with action, not just praise. DSPs should receive benefits such as health insurance and paid time off. We should incentivize continuing education and access to career pathways for DSPs, which increases retention and improves quality. Until Texans regard DSPs as essential professionals, regardless of a pandemic, we will continue to see challenges for DSPs and Texans with disabilities will not have the needed support they deserve.

Establish an IDD Coordinating Council

The promise of the Statewide IDD Strategic Plan fell flat due to the failure to pass House Bill 4571 (87R) by Representative Toni Rose. As you all know, the wide array of services offered to Texans with IDD is complicated, disjointed, and sometimes duplicative. Texas would benefit from a purposeful review of the entire system used by Texans with IDD with a focus on providing coordinated care to ensure high-quality, cost-effective services.

Even when positive policies are implemented and funds are appropriated, Texas legislators and state agencies do not have a strategic plan to track and review system improvements and cost savings within individual agencies let alone across the entire IDD system. Due to the numerous state agencies with appropriated funds to support individuals with IDD, transparent, clear data that tracks available programs and services is hard to obtain. The solution is a coordinated council of state agency decision-makers and IDD stakeholders that provide input about how the entire IDD support system can provide quality, cost-effective services to Texans with IDD.

The Texas Statewide Behavioral Health Strategic Plan has played an integral role in advancing behavioral health policies and has helped Texas achieve significant progress to develop a coordinated statewide approach to providing appropriate and cost-effective behavioral health services to Texans. HB 4571(87R) would have established an IDD Coordinating Council to implement, track, and continuously evolve a statewide IDD Strategic Plan in a similar model to the Behavioral Health Coordinating Council. We look forward to supporting a refile of HB 4571 and any Senate companions during the 88th session.

We appreciate your consideration of this information and recommendations as we get closer to the 88th Texas Legislative Session. Please do not hesitate to contact The Arc of Texas for additional information or if we can be of service.