Breaking Ground 90 - Using the Employment and Community First CHOICES Program: A Parent’s Perspective

When we applied for the Employment and Community First CHOICES (ECF) program in the late fall of 2016, we did not know what to expect nor did we know the opportunities this program would offer our daughter Sarah and our family. Within a few days of applying, Sarah’s newly assigned case manager called to set up an appointment. 

This turned into a series of two-hour meetings in which she asked many questions, completed many forms and finally sent in our application. Once Sarah was accepted we began working on her person-centered plan. Throughout this planning process, Sarah gradually began to understand that this was her plan, with her interests, choices and goals at the helm. She listened carefully throughout, voiced her opinions and signed each of the many forms as they were completed. This took time, several weeks in fact, which was good because as her parents, Paul and I needed this time to thoughtfully review the plan.

Centered on her interests and abilities, the plan included specific actions of community integration and job-seeking opportunities. We also needed this time for our own transition to begin letting go, to encourage our daughter to make her own choices on a larger scale, and to allow the supports through the ECF program to assist her in following through on her choices.

After all, as with our other two children who are now adults, we were raising Sarah to be independent in self-care, thought and action. It was now her turn.

The initial weeks also gave Sarah the time to process this transition. No longer in school with a fixed schedule, what would her days be like, when would she see her friends and what would she do? I could see she was seriously thinking about it, but she was not yet able to picture exactly how it was going to work, and neither were we. Throughout this process it was clear that Sarah’s case manager, Melissa, was part of our new team, listening carefully to our concerns and helping us include them in the plan. As Melissa worked with us with patience and a sense of humor, she got to know Sarah and they developed a warm and friendly relationship.

Once the plan was set, Sarah’s ECF program began with a personal assistant (PA) for community integration. We chose to work with a local service provider who assigned us a PA. During this transition, Sarah learned the PA was coming to assist her in engaging in community activities, and she had choices to make about what she wanted to do. At first I would make her a list of possibilities, always reminding her she was an adult and she could choose what she wanted and needed to do. Soon she was riding her bike around the block, going to the gym to walk on the treadmill, making her grocery list and going to the store.

But something was missing; I still had to seek out the opportunities, plan for them and set the wheels in motion. Staffing became inconsistent in personnel and in attendance.  We began to reconsider how to make this work for us.

Sarah is very active. She loves theatre - both attending and participating - loves to dance, play basketball, ride her bike and be constantly on the move. She checks the weekly schedule in the paper and on Choose 901, a news source for local Memphis events, as well as the various programs offered through the Special Education community and plans her week. She needed a personal assistant with similar interests, who would develop a relationship with her and help her with her plan. 

We decided the Consumer-Directed process would be a better path for us. In Consumer Direction, we actually hire the people who provide some of Sarah’s support services. This means that we have to do the things an employer would typically do, like train, schedule, supervise and even fire the staff that doesn’t work out. We are also responsible for managing the services we need within an approved budget.

We had to work quickly. It was almost summer and Sarah was looking forward to assisting at the New Day Children’s Theatre Summer Camps, a program she had participated in before she aged out.  Although she could just hang out at the camp, I wanted her to have a PA who was experienced in this area and who would be able to recognize what needed to be done and how to help Sarah be a more effective assistant. I was able to hire a college student who was home for the summer. Grace was a family friend, had theatre experience, and had worked with students with disabilities. It was a great match! 

After a few days Sarah was waiting on the front porch when Grace arrived. She would tell Grace her itinerary for the day: “first the gym, then lunch, then New Day”, and off they would go. We were thrilled that Sarah was spending the day in the community doing something she enjoyed and could contribute to. We were also relieved that we could focus on our own work without interruption. 

The best part however was something we hadn’t anticipated. At the end of the day Sarah would bounce in the door, happy to see us and eager to tell us about her day. She would chat on and on about her experience before heading up to her room to “chill out” before dinner. Because we were not driving her, or participating with her, because we each had separate experiences each day, there was so much more to talk about when we all came home. 

There was a noticeable difference about the way Sarah carried herself and the way she interacted with us. There was a feeling of freedom for all three of us that caught us by surprise.

I realize now that summer was the ideal time to begin the ECF program. The New Day program had a set schedule which Sarah was both familiar with and interested in, and we were fortunate enough to find a personal assistant who met all of our criteria. But we knew Grace was heading back to school at the end of the summer and we would need to find another person to fill her shoes. 

We began searching right away as it takes time to find someone and to complete the PA application process.  This involved:

• Completing the PA application over the phone
• Waiting for the PA application to be processed and then mailed back to me or the applicant
• Reviewing the application with the applicant to add any necessary information
• The applicant taking a one-hour training over the phone that can only be taken on Fridays from 9:00-10:00.
• Waiting for a background check to be filed and approved
• The applicant obtaining a CPR/First Aid certification

We were fortunate to find not one but two people who could serve as Sarah’s personal assistants this year. One is a senior at the University of Memphis who has also worked with the University’s Best Buddies program. She is Sarah’s primary PA. The other is a neighbor who is also a substitute teacher.  Although she only has a few hours to offer us each week she is close and can serve as a back-up when needed. 

The greatest challenge has been planning ahead and organizing schedules, but I think we’ll get better at it as we go along. So far Sarah’s PAs have helped her shop for new clothes, taken her to the theatre, to lunch with friends, to shop for birthday cards for friends, helped her organize her photos into books, and taken her to Next Chapter Book Club meetings. Sarah and her PA are planning to attend an orientation at the Humane Society so they can volunteer one day a week. They will also try out a volunteer position at the local food pantry.  All of these activities not only keep Sarah busy, they also help her continue to develop work and communication skills. She enjoys working, serving people and feeling like she is making a contribution to the community. She also enjoys the independence of doing something on her own, with her buddy to accompany her.

Another part of ECF involves employment. Sarah works one four-hour shift a week at Square Beans, a small coffee shop in Collierville. She wants to work more but at this time they do not have more hours to offer her. She has participated in the Discovery and Exploration Job Program at SRVS, a provider agency in Memphis, and is currently working on Job Advancement and seeking additional employment opportunities through SRVS. Sarah’s case manager calls every couple of weeks to check on Sarah’s health and progress and to complete new forms as she transitions from and moves through the job search programs. I called her twice with questions and she took care of them within 24 hours.

ECF is still a relatively new program with many obstacles to overcome. Service providers are challenged to find and maintain the number of qualified staff needed to serve the many participants in the program. Under the Consumer-Directed Program, one can do their own search to find a compatible match, but that too can be a challenge.

The application process for the PAs takes a minimum of four to six weeks, which can turn away an employee who may not have that kind of time to wait for a paycheck. The PAs must also have CPR and First Aid training.  Scheduling training in a timely manner in order to complete the application process is also challenging. We were encouraged to have more than one PA on file so they can serve as back-ups when needed, and we were fortunate to have found three.

We anticipate Grace will be back at Christmas and in the summer when the other two PAs may not be available. We anticipate the need to stay ahead of the process and always be on the lookout for a possible PA to add to our list in order to avoid gaps in coverage.  Our summer PA did not have difficulty collecting her paycheck.  However, we are in the second pay period for our next set of PAs and there seems to be a delay in the payment process.  Hopefully as the program continues to develop some of these obstacles will be overcome.

In talking with other parents it’s apparent the greatest challenge is in finding PAs.  We’ve discussed the possibilities of creating a network of PAs we can all share, providing more work for the PAs who may need more hours than only one person receiving services can offer. We also discussed the possibility of groups of PAs and the people they serve getting together for events, such as gathering at someone’s house for a dinner party, a game nights or a group walk in the park.

Creating the Person-Centered Plan is the first task that is initially overwhelming.  Finding a PA with the personality to work with Sarah and the interest in helping her fulfill her plan was the second major challenge. So far we’ve been fortunate to find the right people. 

Several weeks ago TennCare invited us to a meeting to give feedback. They listened to our concerns and suggestions and hopefully we’ll see the results of this meeting as the program evolves. 

For more information or to apply for the Employment and Community First CHOICES program, administered by the Bureau of TennCare and operated by Tennessee’s health plans or “managed care organizations” (Amerigroup, Blue Cross Blue Shield, United Healthcare), you can visit TennCare’s website (http://tn.gov/tenncare) and search for ‘Employment and Community First’. TennCare has a “self-referral” form on their website you can fill out on your own to apply for the program.

Need help applying for ECF CHOICES?

If you have TennCare, call your health plan and ask for help with a self-referral for Employment and Community First CHOICES. The number is on your TennCare card.

• BlueCare: 888-747-8955
• Amerigroup: 866-840-4991
• United Healthcare Community Plan: 800-690-1606

You can also call your Department of Intellectual and Developmental Disabilities Regional Office for help with a self-referral for Employment and Community First CHOICES.

• West Tennessee Regional Office (866) 372-5709
• Middle Tennessee Regional Office (800) 654-4839
• East Tennessee Regional Office (888) 531-9876