Employment and Community First CHOICES (Part 2)

/ April 5, 2016

By Janet Shouse

About the AuthorJanet smiling

Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.


As I explained last week, Tennessee has created the Employment and Community First CHOICES program to provide long term services and supports to individuals with intellectual and developmental disabilities. Click here to read last week’s blog. So why the change?

The new program will:

  • Serve more people, including some people with intellectual disabilities currently on the waiting list and people with other kinds of developmental disabilities who have not been able to receive services in the past nor had a waiting list to join.
  • Allow Tennessee to provide services more cost-effectively.
  • Provide the home and community based services that individuals with developmental disabilities and their families say they need most.
  • Align incentives toward employment, independent living, community integration and the things that individuals with disabilities and their families value most.
  • Support Gov. Bill Haslam’s designation of Tennessee as an Employment First State, which means that integrated, competitive employment is the preferred option for people with disabilities. Learn more about this by reading the 2014 Expect Employment report. 

Right now, Tennessee serves about 9,000 people with intellectual disabilities in long term services and supports programs, including three Section 1915(c) HCBS waiver programs and Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs). (Usually individuals who reside in an ICF/IID have complex support needs including physical challenges, seizure disorders, behavior problems, mental illness, are visually or hearing impaired, have eating or feeding disorders, or have a combination of these conditions.)

  • About 1,800 people in the Comprehensive Aggregate Cap Waiver (formerly the Arlington Waiver)
  • About 4,950 in the Statewide Waiver
  • About 1,200 in the Self-Determination Waiver
  • About 1,000 in Intermediate Care Facilities for Individuals with Intellectual Disabilities

Tennessee spends about $936 million (state and federal funding combined) for Medicaid long term services and supports for people with intellectual disabilities, but our state’s average cost of providing services to people with intellectual disabilities is nearly twice the national average.

The state recognized this was not sustainable and limited Tennessee’s ability to serve more people.

More than 6,000 people with intellectual disabilities are currently on the waiting list for DIDD Medicaid Waiver services, and many of them have been waiting for years for services. And although state law was changed in 2001 for people who have developmental disabilities without an intellectual disability to be eligible for long term services and supports, funding was never allocated.

The need for such home and community based services and supports continues to grow for a number of reasons.

  • Years ago, people with developmental disabilities usually lived in institutions and received their services there. Now, the vast majority live at home with their families, but they and their families need supports to live and thrive in the community.
  • Many individuals now have aging caregivers, who are in their 70s and 80s and who have health issues of their own. These caregivers are no longer able to provide care for their adult son or daughter or other family member.
  • The prevalence of autism in U.S. children increased by 119.4 percent from 2000 (1 in 150) to 2016 (1 in 68). And those children grow up. Both children and adults with ASD often need long term services and supports.
  • Medical advances now allow individuals with disabilities to live into adulthood who otherwise might not have survived.
  • Individuals with Down syndrome are now living longer, and there is a greater risk of early onset Alzheimer’s disease, sometimes occurring in their late 30’s or early 40’s.
  • Youth with disabilities who have been educated under the Individuals with Disabilities Education Act are transitioning out of school and are interested in working but may need additional supports to be successful in the workplace.

So our state began to look at the way such services and supports are delivered. TennCare and the Department of Intellectual Disabilities held a series of stakeholder meetings in 2013 and early 2014, and took feedback to create a new concept for long term services and supports.

Stakeholders, who included people currently receiving waiver services, their families, and their service providers as well as people on the waiting list and their families, said they wanted:

  • Waiver programs that could serve more people.
  • More independent community living options and help engaging in employment and meaningful activities.
  • More focus on preventive services, rather than waiting for a “crisis.”
  • More education about how to empower themselves instead of relying on paid staff and supports.
  • Services that are targeted at young adults coming out of high school.
  • Better coordination between long term services and supports and other aspects of health, like medical services and behavior services.
  • Consistent, well trained, quality direct support staff.

Once the concept was formulated, feedback was sought again and incorporated, and the new Employment and Community First CHOICES Waiver program was submitted for approval to the federal Centers for Medicare and Medicaid. CMS granted approval in February 2016.

Who is this new program for? People with intellectual and other developmental disabilities who are not currently receiving services.

  • Individuals with ID on the waiting list for HCBS waivers (4,000 of whom are requesting services now, and about 2,000 who have said they would like services in the future.) These individuals will receive letters explaining the new program and what steps they need to take to clarify their current needs for services and supports.
  • Individuals with DD not eligible for current HCBS programs (estimated to be between 3,000-10,500 individuals, based on prevalence and utilization data.) Plans on how to best reach these individuals are still being drafted.

Initial enrollment will target groups identified by stakeholders:

  • Individuals with aging caregivers
  • Young adults transitioning from school and other people who need employment supports

Since only 1,700 individuals are expected to be enrolled in the first year, it will take time to be able to serve all of the people who need support. Enrollment is scheduled to begin in July of this year.

People in current waivers are not impacted, but they may choose to move to the new program later on.

My thanks to Patti Killingsworth, assistant commissioner and chief of Long-Term Services and Supports for TennCare, and her staff for their help.

(Next week’s blog topic: What services will be offered in the Employment and Community First CHOICES program and the answers to some questions.)

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