PROBLEM STATEMENTS:

The State of Tennessee funds intellectual disability services primarily through the Department of Disability and Aging (DDA) and TennCare (Medicaid), with total expenditures spanning hundreds of millions of dollars annually across residential, medical, and educational programs. Have these funds reached the struggling Tennesseans?

As the next Governor of the State of Tennessee, I will research where these funds were allocated and which counties receive these funds.

Specific targeted initiatives include:

• Higher Education: The state commits $1 million annually to the TN Believes program, which provides grants to Tennessee colleges to create and expand inclusive higher education programs for students with intellectual disabilities.

• Psychiatric Care: In TennCare, the budget features $3.75 million to specifically expand psychiatric inpatient services for children and adolescents with intellectual and developmental disabilities.

• Historical Investments: The state previously deployed $400 million in federal funds to significantly expand home- and community-based services (HCBS) for individuals with disabilities.

Historical Investments:

(1) Governor Bill Lee of Tennessee announced that $400 million of federal COVID-19 relief funds will be used to provide home and community-based services (HCBS) to individuals with disabilities and elderly individuals. This investment is made possible with funds from Section 9817 of the American Rescue Plan Act (ARPA), which provides qualifying states with a temporary 10% increase to their Federal Medicaid Assistance Percentage (FMAP) for certain HCBS expenditures between April 1, 2021 and March 31, 2022. States must use the funds exclusively for Medicaid HCBS services by a deadline of March 31, 2024, or they will be lost. The Center for Medicare and Medicaid Services (CMS) approved Tennessee’s $400 million allocation, and TennCare, Tennessee’s Medicaid program, will oversee distribution of these funds, working closely with the Tennessee Department of Intellectual and Developmental Disabilities (DIDD). This is the largest one-time investment in HCBS in the state’s history.

(2) CMS created a toolkit to help state partners plan their funding. The toolkit lists multiple ways a state can use the money to improve its HCBS. CMS urges states to do this by expanding eligibility and increasing access to HCBS, offering a broader range of these services, making long-term investments into HCBS, taking action to strengthen the direct service workforce by increasing the salaries of direct support professionals, and acknowledging the deciding factors of health discrepancies amongst the elderly and people with disabilities. TennCare built upon these recommendations, gathering extensive stakeholder input in developing the HCBS spending plan. “Tennessee is excited to begin implementing the initial spending plan which prioritizes services for people who need them and investments in the front-line workforce who deliver them. The plan reflects input from a variety of stakeholders both as part of broader discussions related to the HCBS delivery system and specifically linked to this funding. Tennessee is committed to investing these funds in ways that will have sustainable impact on the Medicaid HCBS service delivery system and on the lives of those we serve and their families.

(3) Community advocates are also enthusiastic about this spending plan. April Burn-Norris from Tennessee’s Community Bridges Inc., “Under the Tenn Care CHOICES Home and Community Based Services (HCBS)/Long Term Services Supports (LTSS), the adult children of aging parents can be paid as caregivers. If the proposed plan to spend $400 million on these programs will ensure that eligible adult children are paid to provide care for their nursing home-eligible disabled parents, it would be a great way to assist understaffed nursing facilities and an opportunity to help otherwise financially burdened Tennesseans. I look forward to seeing the resources spent on this program address the need for paying more adult children to provide care to their nursing home-eligible disabled parents in Tennessee.

(4) Tennessee's HCBS spending plan focuses on three key areas of opportunity: 1) to improve access to HCBS for persons supported and family caregivers; 2) to invest in HCBS workforce capacity and competency; and 3) to invest in HCBS provider capacity.

(5) Additionally, the plan aligns with two priorities established by Governor Lee and the Tennessee General Assembly before the pandemic: 1) to “provide services to 2,000 individuals with intellectual and developmental disabilities,” resulting in a reduction of the TennCare Employment and Community First CHOICES program waiting list by more than half; and 2) to “invest in recruitment, training and retention of frontline support staff to better serve Tennesseans with disabilities.”

Thanks to the proposed HCBS spending plan, individuals and families in Tennessee will be able to access resources to live a more dignified life.

Federal Funding:

During the 2022–23 school year, public schools in Tennessee received 18.5% of funding from the federal government. In all, public schools in Tennessee received $2.65 billion, or $2,558 in federal funds per student. That's 3% higher than the national average of $2,233 per student.

Lifelong Economic Cost:

Lifetime economic costs for people with four developmental disabilities (DDs): mental retardation, cerebral palsy, hearing loss, and vision impairment. Estimates were generated for direct medical costs, direct non-medical costs, and productivity losses resulting from increased morbidity and premature mortality. Findings suggest that lifetime costs, in excess of costs for individuals without DDs, are approximately $870,000 per person for mental retardation and $800,000 per person for cerebral palsy (in 2000 dollars). Analogous cost estimates for hearing loss and vision impairment are approximately $330,000 and $470,000, respectively. Roughly four-fifths of total costs reflect productivity losses.

Every state offers programs primarily through Medicaid Home and Community-Based Services (HCBS) waivers that pay family caregivers, including parents.

Most of these compensation programs are accessed through the following avenues:

1. Medicaid HCBS Waivers (Self-Directed Care)

All 50 states offer HCBS Medicaid waivers. These allow the disabled individual (or their guardian) to manage their care budget and hire the caregiver of their choice, which can include parents. The caregiver is usually paid an hourly wage based on local rates.

2. Paid Family Leave (PFL)

Thirteen states (California, Colorado, Connecticut, Delaware, Maine, Massachusetts, Maryland, Minnesota, New Jersey, New York, Oregon, Rhode Island, Washington) and the District of Columbia have paid family leave laws. These programs provide temporary partial wage replacement (typically 60% to 70%) for a limited number of weeks so you can stay home to care for a seriously ill or disabled child.

3. State-Specific Programs & Stipends

Some states have unique programs, pilot waivers, or stipend models specifically tailored to parents of children with severe or profound disabilities:

• Colorado: Offers the Family Caregiver Support Program (FCSP) and specific HCBS waivers.

• Pennsylvania: Has implemented a Family Home Health Aide program allowing parents of children approved for nursing or personal care to be paid.

• Oregon: Operates the Children’s Extraordinary Needs Program.

Atwater's Goal and Strategies:

(a) Notice of Funding Opportunity (NOFO): Expand NOFO supports lifespan resource needs for people with autism or fragile X syndrome.

(b) TBA - Continue Strategies