“What Happens After I Apply?” — TN-START

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?

We’re setting out to answer some of those questions.

This article continues our story series about real people who have applied for different disability service programs in Tennessee. We want to illustrate 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.

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Cristina and David: A TN START Story

TN START is a crisis prevention, intervention, and response program. "START" stands for:
• Systematic
• Therapeutic
• Assessment
• Resources &
• Treatment

START is a program for people with disabilities who also have mental health concerns. It helps people who are in crisis situations, dealing with dangerous behavior, have been in psychiatric hospitals, and/or have complex mental health needs. It is a national model created in the ‘90s that operates in several states, including Tennessee, since 2021. The Council helped fund a START pilot many years ago. We also funded a training in 2020 that helped create this new START program in the Department of Intellectual and Developmental Disabilities services (soon to be TN’s new Department of Disability and Aging).

Thank you to Cristina for talking to us about her brother David’s experiences with the TN START program. Thank you to David for giving us permission to share this story. They asked that we only use their first names. (The photos with this story are representative and do not show the individuals in this story.)

David is a man in his 30s with intellectual disability and paranoid schizophrenia. Until May, he had been living in East TN with Cristina and their aging parents, who have health concerns of their own. They were worried about their ability to be David’s caregivers.

David recently got support to move out to his own apartment in a new city, where he gets support from a provider agency under the Employment and Community First (ECF) CHOICES program as well as the START program. We have summarized and paraphrased our conversation with Cristina here.

Breaking Ground: How did you and David learn about the TN START program?

Cristina: Claire, David’s support coordinator with the ECF CHOICES program, told us about TN START. We said we were interested. Then we got a call one day from TN START saying that Claire had made a referral, and they wanted to know if we wanted their crisis intervention services. We said, “Sure, why not? Let’s try it.”

David was having a lot of problems, emotional outbursts and feeling suicidal a lot of the time. He was having delusions and sometimes hallucinations – hearing voices and seeing things that weren’t there. He was struggling with some extreme and risky behaviors. He would run away from home a lot.

Sometimes, he would threaten to harm himself or run out to the median of the highway. If he was feeling like he needed attention, he would call emergency services. So, Claire thought some extra professional intervention might help us help David stay safe.

He still has some of those behaviors, but now he has more professionals to help him deal with them. He still sometimes has the delusions that people want to harm him, but they are working on it. He recently moved out from our family home and is getting community living services. Claire is going to be able to still oversee David’s case. She’s been with us for at least 2 years.

I have other siblings, but as far as taking care of David, it’s just me and my parents. My mom is going to be 70 soon and my dad is in his late 60s. Their health issues are preventing them from taking care of David on a daily basis, and I need to care for them.

Our mom had a stroke last year, so I’ve been taking care of mom. With David's behaviors, him being at home with her just wasn't a good situation any more.

BG: Tell us about what came next after applying to START.

Cristina: We did a video chat with the START team.

At the time, David was not in a very good mood, so he answered a few of the questions, and then said he didn’t want to answer any more. Claire, the ECF support coordinator, stepped in and helped us. She answered a lot of the questions that the START team had as they developed the crisis plan for David, since she had already interviewed him, met him in person, knew him well. So, we only did that video chat once with him for the initial meeting and then the START team began to learn more about him through monthly visits.

BG: How has the TN START program helped you and your brother?

Cristina: Before TN START, David would use mobile crisis services. If he had a crisis, he would ask to call them and he would talk to them over the phone.

They would speak to him by phone, and if he ended up at the hospital, they would do a psych evaluation in person sometimes but wouldn’t come out to our house.

That was very different from TN START. The TN START people will always say, “If you want us to come over, we will be right there as fast as possible.” That has been very helpful.

Melissa was our START assessment and stabilization facilitator. She was supposed to come to our house and speak with David once a month, but sometimes we said it would be better if she used her monthly visit to support him at his psychiatric appointments.

Sometimes he would have difficult behaviors there during those appointments. But Melissa was very calm and knew how to engage in conversation with him. I would take him to those appointments, and sometimes he decided he didn’t want me to go in to see the doctors with him. So, Melissa would go with him, and support him while also being MY advocate, and represent me as his family caregiver. This was so helpful because she could give the doctor my feedback. It was extra help in a way that I really needed and didn’t expect.

START shows up if David needs someone to talk to, any time. They also just get to know him and suggest programs that might be helpful for him, like different therapies. They are really good at deescalating conflicts. David can have some manipulative behaviors and they are good at not getting pulled into that. I think [his new living arrangement] is the best thing for him right now.

My advice for other families thinking about applying to TN START: Be open, be honest, ask questions. They are very helpful.

Our experience with TN-START has been 100 percent positive.

I would tell other families that START can connect you to resources you may not know about, suggest treatment plans that can help, evaluate medications, see if they need to be changed. I feel like they are a very helpful resource for people with disabilities.

BG: What’s next for David?

Cristina: He’s in community living services in an apartment with 24/7 support staff. They give him his meds and help him with food and chores. He’s getting a roommate soon. We are hoping that is going to go ok. I think he has a good support team. I have spoken with some of them over the phone and met some of them in person, and they are very helpful and knowledgeable.

He loves to listen to music. His passion is collecting and using walkie talkies. He says he can keep up with the police and firefighters and the weather through his walkie talkies. He says he feels like he is in touch with the world through his walkie talkies. I think he would do best if we can find him some kind of work that he enjoys doing. Once they get him into extra curricular activities, then it’s easier to introduce it as work later on and say, “Hey you could do this and get paid!” Since he moved to the new city, he has a new START facilitator, Trent. David told me he liked talking to Trent, so I think it will be a good change. He sounded very positive about the conversation, so I am feeling hopeful.

Having him be on his own, learning to be more independent, learning to take care of himself is what we want him to end up doing – something that makes him feel accomplished in some way. I think that would be helpful.