What Happens After I Apply?

three white, young adults pose with their arms around each other in front of a purple drape background with purple, black, and gold balloons
Harrison poses with Hannah and her younger brother, Noah Culwell. Hanna recently graduated from college and began her career as a teacher. Noah is under age 18 so not eligible to serve as paid staff through ECF CHOICES. Tecia says she has paid out of pocket for Noah to help out some as she searches for new support staff for Harrison.

You’ve learned about a disability service program that could help you or a loved one. You’re considering or have already applied. But…what next?

People with disabilities and their families tell us this can be a confusing time. They ask questions like:

  • What is the enrollment process?
  • What will I need to do next?
  • How will services really work?
  • How will this program help me?
  • Who do I talk to if I have a problem or question?

We’re setting out to answer some of those questions. In the coming months, we’ll be sharing stories of real people who have applied for different disability service programs in Tennessee. They’ll share what the process was like, lessons they learned, and how services are working for them.

Have you recently applied for a disability program? We’d love to hear about your experience! Email us at TNDDC@tn.gov.

A white young man and two older adults pose together, smiling at the camera. They are wearing race bibs and Fourth of July garb.
Harrison, dad John, and mom Tecia showed up big for the Smithville Fiddler 5K, which Tecia directs.

Tecia and Harrison: An Employment and Community First CHOICES Story

Tecia Puckett Pryor is the former chair of the TN Council on Developmental Disabilities. Her son, Harrison, has autism and is currently in the transition program at DeKalb County High School in Smithville. (Transition programs help students with disabilities ages 18 – 22 learn skills for employment and independence after graduating from high school.) Tecia recently applied for and enrolled Harrison in Employment and Community First (ECF) CHOICES. ECF CHOICES is Tennessee’s program for daily in-home and community supports for people with intellectual and developmental disabilities. (You can learn more here: https://www.tn.gov/tenncare/long-term-services-supports/employment-and-community-first-choices.html.) She talked to us about that experience. The interview has been edited for clarity.

Breaking Ground: What did you know about the program before you applied?

Tecia: I knew that ECF provides support for people to be out in the community, preparing for employment, preparing for next steps and more independence. I would have researched and learned about options even if I hadn’t been on the Council, but it certainly helped to learn about services while I was on the Council.

What made you decide to apply? What benefits did you hope to get from the program?

For years, we have paid for someone to help us in-home with Harrison, to do educational and social activities. This program would help us by paying for a support person that could build on what we have already been doing but also add helping Harrison with household tasks, independence, and job skills. It gets expensive to have weekly in-home help, and he is going to require long-term care to some degree. The wages this program pays for direct support staff are very competitive for the part-time job market in Smithville. I felt like with ECF CHOICES, we could attract even more qualified folks to work with him. It’s a challenge trying to find the right person.

Tell us about the documentation you needed for the application process. Any tips for gathering and organizing it?

I don’t remember needing documentation. I logged onto the website and applied one day after a Council meeting last spring, a year ago. Within a few months, we did a phone interview to set up his care plan. I think they did ask me about medications and information I keep at my fingertips and had saved on my phone, but I didn’t need to provide a lot of documentation. It might be helpful to start a “draft” application that you don’t actually submit so you can see what the steps are. It was fairly simple to apply. The hard part was getting it launched. That took several months.

What do you wish you’d known beforehand?  

I didn’t know that there would be a wait to find a provider for the employment part after enrolling. I wasn’t anticipating that. It took months to get us set up with Easter Seals [the provider agency managing Harrison’s “employment exploration” services that helped him learn about jobs he might want to do in the future].

I have realized that over the years, Harrison’s therapists have often helped me! I have always appreciated having somebody to help me think through goals and what we should work on right now. I have realized that I don’t really have that anymore, as he’s gotten older. Our support coordinator does help, but I miss having a team of people who are helping me work with Harrison and think about what’s needed next. I think I can do more with the Charting the LifeCourse tools[1] to help me plan and set goals for where we need to go. I’m realizing I need to do more of that. It’s hard to find the time!

What was the biggest help to you during the process?

I have a new support coordinator, and she’s really great. Last year, I felt like we were stuck and not moving forward with a previous support coordinator. The person I have now is located near where we live. She came out in person and met with our whole family - my husband, John, Harrison and me – to update his care plan. She is very attentive and helps us work through any questions or problems.

We’re actually toying with starting to use some enabling technology[2] to be able to leave him at home more and work on his independence skills. I just got the proposal yesterday. The support coordinator is helping us think through that.

What advice do you have for other families who are considering applying for ECF or other disability support services?

Just do it! Jump in, apply, and push. Figure out what specific services you want to apply for and follow up. Not everyone will reach out to you.

What was the next step after you were approved to enroll?

Because we opted for consumer direction, which means we hire our own support staff, instead of going through a provider agency, we were assigned a representative through the vendor who was paying for the services – a supports broker. And then we went about getting our direct support staff person qualified. We were lucky that we had a support professional already on board, but she had to provide documentation of her CPR certification, had to do some online training. And then we had to get her approved to be paid. That took a little bit of time. She has now graduated from college and gotten a job as a teacher, so we are looking for someone new. Even if we had someone today, it would take about a month to get them through the process.

It took until just this past May to get Harrison’s “exploration” employment services going. There was a second wait list after we were enrolled to find a provider agency that could offer those services. I kept calling every few weeks to check on progress. Then they wanted to drive him to job locations an hour away. I said, “No, he’s going to work here in Smithville. This is his community.” It didn’t make sense for him to drive an hour away for just a few hours of job exploration per week. After some discussions, I think we are all on the same page that he needs to explore jobs in his local community.

The new job coach is getting to know Harrison now. It takes some time to learn his way of communicating, what he likes and what he needs. She’s also going to observe at school to learn more about him.

Who is your main contact about services now? How do they help coordinate services?

I feel like my support coordinator has got my back. She’s trying to work problems out. She’s very good. She can direct me if she’s not the person to answer my questions.

What makes the services worthwhile? What has been the net benefit for your family?

It has shifted my focus to another level of trying to launch Harrison more into independence and into job skills. That’s the main thing. Because we have all these different services we can tap into, it’s helping us shift our mindset from just meeting his needs as our son to launching him into young adulthood and this next phase of life.

 

[1] The Charting the LifeCourse tools are free, downloadable worksheets that self-advocates, families and professionals can use to do person-centered planning, setting goals for the future, and brainstorming about needed supports: https://www.lifecoursetools.com/.

[2] Learn more about “enabling technology” and how it can support people with disabilities here: https://www.tn.gov/didd/for-consumers/enabling-technology.html.

Role of a support coordinator

If you or your loved one gets disability services[1] funded by Medicaid, you will have a person helping you manage those services. Depending on what program you are in, these workers can be called:

  • Case managers
  • Support coordinators
  • Independent support coordinators (“ISCs”)

In the simplest terms, a support coordinator (or folks with any of the titles above) work to help you and your support system or family learn about and connect to the resources you need to live a good life in your community.

What does that look like?

It is the job of your support coordinator to …

  • Help you understand what services are available through the program you are in
  • Help find providers for those services
  • Help you understand your rights and responsibilities
  • Help you understand how to hire and pay your own workers to provide support you need if you are participating in “consumerRole of a support coordinator direction” or self-directed services
  • Write a plan with you (often called a “person-centered support plan”) that explains:
    • Your goals and what is important to you, and for you, to live a good, happy, healthy life
    • What supports, services, and people (paid professionals and possibly also friends/family) you need to support those goals
    • Your strengths, skills, and talents
    • How your disability impacts your life
    • Things about your background and life (like your medical history, doctors, cultural or religious preferences, job goals, how you communicate, different kinds of therapies you’ve tried, what technology you use, community involvement, etc.)
  • Meet with you and your family/support team in person at least once a year to talk about your plan, how you are doing, if you need any more support or different services, how your services are working, and what may need to change to help you live a better life.
  • Meet or communicate with you ANY TIME (in person, by phone, or virtually – your choice) to update your plan or talk about problems you’re having, new goals or activities you want to try, or new services you need. You can contact your coordinator at any time – you don’t have to wait for your annual person-centered planning meeting! You can also ask them for a copy of your plan at any time.

What if I’m having issues with my support coordinator or getting the help I need?

If you’re having trouble reaching your support coordinator, hearing back from them in a timely manner, or working with them, you can:

  • (For anyone getting services through Katie Beckett, ECF CHOICES, CHOICES or DIDD’s 1915c waivers) Contact Disability Rights TN’s Beneficiary Supports System
  • (For those who get services through the DIDD 1915c waivers): Reach out to your local DIDD regional office.
    • West: (901) 745-7200
    • Middle: (800) 654-4839
    • East: (888) 531-9876
  • (For those who get services through the ECF CHOICES or CHOICES programs): Call the number for your health plan and ask to speak to the director of the program about issues with your support coordinator.
    • Amerigroup: 866-840-4991
    • BlueCare: 888-747-8955
    • United Health Care: 800-690-1606
  • For Katie Beckett Part A: BlueCare: 888-747-8955
  • For Katie Beckett Part B: your local DIDD regional office (see above)

Still have questions about the role of support coordinators? Let us know at tnddc@tn.gov and we’ll do our best to find an answer!

[1] “Disability services” funded by Medicaid are often called “long-term services and supports” (LTSS) and “home- and community-based services” (HCBS). In TN, programs that provide these sorts of services for Tennesseans with intellectual, developmental, and physical disabilities include the Katie Beckett program, the Employment and Community First CHOICES program, the CHOICES program, and the “1915c waivers” under the TN Department of Intellectual and Developmental Disabilities which closed in 2016. Read more about all these programs here: https://www.tn.gov/tenncare/long-term-services-supports.html.