February 17, 2022
Nate Crippes / Public Affairs Supervising Attorney
ncrippes@disabilitylawcenter.org
Andrew Riggle / Public Policy Advocate
ariggle@disabilitylawcenter.org
(801) 363-1347 / (800) 662-9080
disabilitylawcenter.org
Committee Members,
Please see the below recommendations for funding priorities from the Disability Law Center.
Services for Utahns with Intellectual and Developmental Disabilities
Home and community-based services providers strive to provide high quality care, help Utahns with disabilities be integrated, and ensure that they direct their own lives. Unfortunately, a growing number of individuals cannot access services or risk losing their services because of a 90% turnover and 20% vacancy rate for support staff.
This staff shortage has meant that people with disabilities have had to stay home from their programming, move into larger settings, or been discharged from their provider. As a result, one parent told us their children are experiencing depression and suicidal thoughts, and another said their child was admitted to the hospital.
Utahns discharged from a provider, and those newly entering the system, are having trouble finding one. Recently, we’ve received calls about individuals facing discharge to a facility or homeless shelter. This emergency will only worsen when 400-450 more individuals seek services if parental caregiver compensation is discontinued. So, even though we appreciate the governor’s one-time recommendation of $3.4M, it’s crucial the legislature make the program ongoing.
We also support SSA’s #1 priority of $24 million ongoing for DSPD and ICF/ID direct care staff rates, and we urge this Committee to fund this request. With fast food and retail paying at least $15 an hour, we can’t afford anything less to retain and attract high-quality professionals willing to perform this extremely personal and demanding work.
We also support the committee’s #2 recommendation of $16 million for the waiting list, with at least 10% finally going to the limited supports waiver and encourage you to fund this as well. 75% of Utah’s spending goes to institutional placements for people who are aging or have physical disabilities, while only 25% of spending is allotted to home and community-based services. Utah is 39th in the nation for the percentage of home and community-based funding as a portion of the total long-term care spending for people who are aging or have physical disabilities.
These are big asks, but without an investment of this magnitude, there’s risk the State will fail to comply with federal conditions for receiving Medicaid funds. Likewise, if spending almost $400,000 on SSA’s #4 ongoing of a 50-bed facility for “behaviorally complex” individuals, or the Utah State Developmental Center, is its only other answer, the state’s compliance with the nondiscrimination provision and integration mandate of the ADA could be called into question.
Long-Term Services and Supports Study
The demand for long-term services and supports (LTSS) will only grow as individuals live longer and caregivers age, so now is the time to re-evaluate how we want to provide care. We must move beyond bricks and mortar and build a robust community-based system. For those who require professional care – whether in- or out-of-home – we need a plan for providing it in a way we can feel confident our loved ones are safe, happy, and healthy.
That’s why we strongly support SSA’s #28 priority of Sen. Iwamoto’s LTSS study, and we ask the Committee to fund this study, which will build on DSPD’s waiting list management study and DHHS’ strategic planning workgroup to project the growth in the population receiving and waiting for LTSS, as well as changes in their needs, over the next three, five, and 10 years. Based on these, it will evaluate a range of funding, service array, and delivery options, along with best practices and models from other states, to address them.
For example, as we look at Utah compared to other Western states, we serve the lowest percentage of its ID/DD residents, at around 7% It should come as no surprise then that, over the last decade, the DSPD waiting list has more than doubled. At the same time, largely because we’ve chosen to serve the most critical and often costly first, the number of individuals served has only increased by about a third. Consequently, while only slightly more than a quarter of those on the list are waiting for more intensive day or residential services, the average wait time is now about 5.5 years, with some individuals approaching 20 years or more. This is a big reason we support the committee’s #2 recommendation of waiting list funding, as noted above.
Moreover, on the other end of the spectrum, we know 77% of Americans 50+ want to stay in their homes as they get older – a number that has been consistent for more than a decade. As we get older, we often turn to family for help. Utah has an estimated 350,000 Utahns who are caregivers to a loved one providing 290 million hours of care – including help with activities like shopping, transportation, household chores, or with health care needs each year at an estimated value of $4.1 billion. As our state ages, we need a study to develop a plan for how to support them and help prevent prematurely turning to health care professionals – often at the cost of Medicaid and Medicare.
The goal is to give the Legislature information, tools, and recommendations, which can be shaped into a roadmap – including measurable milestones and outcomes – you and your colleagues can use to proactively close the gap between those receiving and needing LTSS over time in a more predictable, manageable, efficient, and effective manner. Indiana and Hawaii have recently released similar RFPs.
Finally, ARPA funds and/or a 50% Medicaid administrative match could reduce the $400,000 cost. The influx of one-time dollars this year is our opportunity to invest in ideas and infrastructure that will help shape the future of our state.
Long-Term Care Facilities
With the emergence of COVID-19, the State’s lopsided funding for institutional and home and community-based services has proven to have fatal consequences for Utahns in need of longterm care. Nursing homes, assisted living facilities, and intermediate care facilities represent an outsized share of Utah’s overall COVID-19 deaths, accounting for 22% of all COVID deaths even though residents in these facilities represent less than 1% of our state’s population.
The DLC will soon be releasing a report on the impact of COVID-19 on long-term care facilities. Among other things, it will show that Utah lags far behind other states in its Medicaid funding of both institutional and community long-term care. According to the most recent AARP scorecard, Utah ranks 51st out of U.S. states and territories in Medicaid spending for long-term care for people who are aging and people with physical disabilities (for both nursing facilities and for HCBS services for these populations). The State also ranks 51st out of U.S. states and territories for all Medicaid long-term care spending for people with all types of disabilities. The most recent data from CMS shows that Utah has the lowest Medicaid expenditures for long-term care per state resident.
A 2017 Legislative audit of Health Facility Licensing also found that Utah was among the 10 worst states for public access to basic health information. The audit also found that Licensing had not utilized many of the available enforcement tools available, including monetary penalties. Like assisted living facilities, Utah’s use of monetary penalties in nursing homes could be improved. Over the past three years, Utah is ranked 39 out of 53 for penalties levied against nursing homes. CMS data also currently shows that Utah has the 17th highest rate of long-term care facility staffing shortage in the nation; 41.8% of nursing facilities in Utah report a shortage of nurses and or/aides.
Given the findings from the audit and our report on the state of facility-based care during the pandemic, we encourage you to restore SSA’s #17 ongoing priority to $240,000 for 3 health facility licensing inspectors. We would also recommend looking at funding this with fees on the facilities, which the Social Services Appropriations Subcommittee discussed, because this could direct funds to Licensing rather than the General Fund. We also urge you to support the committee’s #23 priority of $900,000 ongoing to continue improving the quality of care for ICFs/ID residents who choose to remain.
Mental Health
DSAMH has mentioned the housing crisis, acknowledging that “Utah has not had a recovery support program for individuals that are considered Severe and Persistent Mentally Ill or youth with Serious Emotional Disturbance.” Yet, there’s no plan to find safe, appropriate housing for this population or those with co-occurring SUD.
Thus, we’re excited to support SSA’s #8 one-time priority of $127 million in deeply affordable housing. Likewise, we appreciate state homeless coordinator Niederhauser’s advocacy of $10 million for permanent supportive housing. For housing to be successful, supports must be available. For supports to be effective, housing must be stable. We must move beyond the brick and mortar of crisis intervention, involuntary commitment, hospitalization, or incarceration to build a robust infrastructure of community-based supports designed to help individuals be active and productive members of society.
Public Education
As for public education, please fund the committee’s #2 priority of $2,350,000 for the special education problems rate adjustment. The adjustment in the cap is especially crucial for smaller or rural districts in which one student with intensive and/or high-cost needs can rapidly deplete their state special education money. Additionally, though it’s not technically an education appropriations committee item, please also support students with disabilities becoming active and productive members of their community through SSA’s #25 priority of $195,000 ongoing for USU’s Institute for Disability Research Policy and Practice’s School-to-Work Transition Program.
Medically Complex Children’s Waiver
Finally, we appreciate SSA prioritizing Rep. Eliason’s $3,614,369 request at #19 on the ongoing list. Unless they depend on technology, such as a tracheotomy or a ventilator, this program is the only way many parents can get help or respite from caring for their medically involved child. The request would support an additional 300 children through age 18.
Thank you for your time and consideration of our recommendations. If you have questions or would like more information, please do not hesitate to contact us.