Transcript

Thank you for your leadership in the 87th Texas Legislature. Under your guidance, the House considered and passed numerous measures beneficial for all Texans. The Arc of Texas looks forward to a productive interim that maintains the meaningful momentum you have generated for thoughtful policy deliberation and public participation in policymaking.

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 for the IDD interest list and staffing shortages.

Phil Gramm said, “I love Texas because Texas is future-oriented, because Texans think anything is possible. Texans think big.” In this spirit, The Arc of Texas urges members of the Texas Legislature to think big when considering options to reduce our big interest list for waiver services. We urge you to be future-oriented and like a good Texan does – think that anything is possible. What The Arc of Texas proposes to the 88th Texas Legislature will make a significant impact by identifying existing opportunities that when put together would equal a huge improvement to the landscape of IDD services in Texas. 

Impact of Waiting on a Waiver

In March, The Arc of Texas launched a campaign called “Waiting on a Waiver” to collect names and stories of Texans waiting on HCBS waivers. We have collected almost 300 responses since its launch and the stories that were shared with us are harrowing. Every day, Texas families are faced with impossible decisions because they wait. 

“This wait is unacceptable – for Texas our list is more than all the other states combined. It’s enough to force families to move.” Respondent #214, Constituent of Representative Lucy Hull (TXHD 138) 

“The families I see waiting and waiting (including my own) is absurd. Hard working families who can barely make ends meet because all resources go to the family member on the wait list. Years of waiting – unable to pay off student loans, buy a house, contribute to retirement, etc.” 
Respondent #179, Constituent of Representative Matt Shaheen (TXHD 66) 

“We have two special needs children. We didn’t know our youngest was eligible so he didn’t get on the list until 5 years after his brother for CLASS. Nobody told us about HCS until then either. It’s been 11 years. We applied for diversion for his brother because of the severity of need for my oldest. My youngest is 16. We have him on the buy in program. Their care is a constant source of anxiety. We can’t even move or we risk services.”
Respondent #168, Constituent of Representative Brad Buckley (TXHD 54) 

“It’s a shame that the State of Texas is the worst state in the nation when it comes to providing waiver services to people with disabilities.” 
Respondent #196, Constituent of Valoree Swanson (TXHD 150) 

“I received good advice to get my daughter on the interest list long before services were needed. The twelfth anniversary of joining the list has just arrived. My daughter will be 15 in a few weeks, and the services we had hoped would be there to ease her transition into adulthood are not even on the horizon yet. The last time I checked she was somewhere around 20,000 on the waiting list.” 
Respondent #253, Constituent of Representative Donna Howard (TXHD 48) 

“The process is so confusing. I have 2 advanced degrees but still don’t understand the interactions between Waivers, lists and resources that my very severely disabled adult child is waiting for. As I age, I worry about my ability to continue to care for her in my home. I would love to see her settled before I die.” 
Respondent #138, Constituent of Representative Ann Johnson (TXHD 134) 

“Our daughter has several disabilities and developmental delays due to an extremely rare genetic condition. We reach our out of pocket maximum of $13,000 every year due to therapies, hospitalizations, and treatments. It is extremely challenging to find childcare for her as most daycares and preschools will not accept her with her medical condition. My husband and I are both teachers and struggle to personally provide the level of care that our daughter needs.” 
Respondent #83, Address Not Provided 

I hope these quotes provide you with a better understanding of the dire position we continue to put individuals and families in every single day, year after year. The impact of waiting on a waiver and more stories will be shared by the Austin American Statesman in an upcoming investigative reporting series. 

Recommendations for Reducing Lists for Waiver Services 

I know my colleagues will likely bring up the state of Louisiana’s approach for transforming our Medicaid waiver system. And while the waiver system in Louisiana has merits, an abrupt copy-and-paste approach to tiering our waiting lists here would ultimately result in a slop-and-waste system. And let’s be honest about the tired waiver system. Louisiana still has people on a list who are “waiting” or “interested” in more comprehensive services. 

Louisiana has a system where only 40% of people are found to have “no unmet needs” because more people have Medicaid coverage there. Just plain ole Medicaid coverage can provide many people with disabilities with what they need. If you get more people on Medicaid – especially children – demand for Medicaid HCBS waivers decreases. Louisiana also offers flexible funds for individuals and families. In addition, the state is implementing the TEFRA option. 

We propose five solutions to reduce the lists for waiver services.

1. Expand Medicaid Buy-In
2. Implement TEFRA Option
3. Adjust TxHmL Eligibility
4. Bring Back In Home and Family Supports
5. Fund more HCBS 

Expand Medicaid Buy-In 

Expand eligibility for Medicaid Buy-In to the federally allowed limits. 

Implement TEFRA Option

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 certain criteria 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 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 is currently 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 

The growing 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. 

Louisiana’s Individual and Family Support provides an array of flexible supports and services to allow people with developmental disabilities to live in their own homes or with their families in their own community. These supports are available based on priority of need, rather than first-come, first-served. There is no menu of services, but rather the supports are flexible to meet individual needs. Louisiana also offers a Flexible Family Fund. Their Flexible Family Fund provides a monthly stipend of $258 to families of children with the most severe developmental disabilities to help offset the cost of maintaining their child in their own home. 

The importance of Louisiana’s State Plan Benefits and Act of 378 cannot be understated – their Individual and Family Support and Flexible Family Funds are key to what they are offering people with “no unmet needs”. Any proposals to pursue the Louisiana model must include continuum of service options while people wait to be declared emergent or urgent. These people with “no unmet needs” are still waiting on a waiver but can access some services through State Plan Benefits and Act 378. It should also be noted that Louisiana expanded Medicaid.

Fund more HCBS slots 

HCBS Medicaid waivers provide critical services and supports to individuals with disabilities as an alternative to institutional care. Since these services and supports (attendant care, nursing, employment assistance, etc.) are almost never covered by private insurance, individuals and families are faced with the unbearable decision of entering a segregated institution or waiting years with unmet needs. The Texas legislature must focus on the goal of rebalancing the system to support individuals in the most integrated setting, increase self-determination, and utilize state funds responsibly, which involves addressing many systemic issues within the system at once. 

There are a lot of myths about individuals on the interest list, including that many are not eligible for services and/or do not really need them at that time. First, although eligibility is not determined until an individual comes to the top of the list, it is important to note that 67% of individuals offered a home and community based services (HCS) waiver, the longest waiver waitlist, are found both eligible and accept the services. Second, the reason individuals and families sign up for services as soon as they learn of the list is due to the long wait for services. Individuals and families cannot wait fifteen years from the moment they are in critical need to receive support. 

People want an HCBS slot because they need it. Texas should fund more while planning for our waiver transformation. 

Recommendations for Reducing Associated Staffing Shortages

We propose four solutions to reduce associated staffing shortages. 

1. Allow Family Caregivers
2. Continue COVID-19 Flexibilities
3. Support Inflationary Adjustment
4. Elevate the Profession

Allow Family Caregivers 

Regarding 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 care workers. We must bring providers up to where they need to be.

Elevate the Profession

Finally, the long-term services and supports system in Texas would not exist without the workforce of direct support professionals (DSPs). The workforce “crisis” for DSPs has continued for so long, it is not a crisis but a systemic failure. This has been highlighted during COVID-19 when 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 communities. DSPs are the backbone of the Medicaid long-term 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 offer 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 who will not have the needed support they deserve. 

Recommendations for Entire IDD System 

The Arc of Texas never supported the Louisiana tiered waiver system. We supported a whole system approach through a statewide IDD strategic plan specific to the current needs of Texans. Now more than ever we see the need to plan and prioritize people with disabilities who want to live and work in their communities. Planning and making people with disabilities the priority requires stakeholder input and trust – trust which the state does not currently have. 

We propose two solutions to improve entire IDD System

1. Establish IDD Coordinating Council
2. Value Stakeholder Input and Gain Trust

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 this Committee’s own member, 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 during the 88th session.

Value Stakeholder Input and Gain Trust 

A waiver system transformation can’t happen overnight, and frankly, we wouldn’t want it to. We want Texas to earn back the trust of individuals and families and show them that their input matters and that their personal experiences navigating the IDD service system are valuable. Within – and between – the lines of the problems lies our solutions. 

To demonstrate that Texas values stakeholder input, we must provide travel funds for workgroups. Since FY 2000, legislative authorization has been significantly limited for health and human services agencies to reimburse public members for travel expenses necessary to participate on state-level advisory committees, councils, and workgroups that focus on issues of importance to individuals with developmental disabilities. This support recognized the importance for individuals with disabilities and their families to participate in policy discussions about the services and programs that impact their lives. However, many individuals who benefit from publicly-funded supports have limited personal resources to pay their own travel expenses. Texas should prioritize the value of providing travel support for those that don’t have the support of a sponsoring organization or association for their travel to enable their participation as members of advisory bodies that are established by statute, approval of the agency’s governing board, or authorization of agency head.

Conrad Hilton once said, “There’s a vastness [in Texas] and I believe that the people who are born here breathe that vastness into their soul. They dream big dreams and think big thoughts, because there is nothing to hem them in.” Let’s make sure Texas is known for our big solutions to this even bigger crisis and not by the size of our wait list. 

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.