SUPPORTIVE BEHAVIOR SERVICES

INTERVIEW BY: NICOLE LANGUELL PHOTOS BY: LUCY FLUELLEN

Okay Joaquin, tell me about yourself, what was your journey to get here?

“Yeah, my absolute least favorite question ever. Let’s see, I am in my 30s and I am from Lafayette. I went to Indiana State University for my undergrad and graduate degrees. I began as a behavior consultant a long time ago and continue to practice to this day. Eventually I worked myself up to becoming an agency director and further learned and grew, which set the stage for me to build SBS. These days I oversee SBS, co-own an aba center (Indiana Full Spectrum Therapies), and host the IBA podcast, which has been an exciting challenge for me.”

Can you tell me about Supportive Behavior Services (SBS) and its mission as a company?

“Supportive Behavior Services is an Indiana Medicaid Waiver provider of Behavior Management services. Of course, in my opinion, we are the premier behavior provider that is leading the way in the industry. When I opened SBS, one of the founding principles was that Behavior Management would be the only service we will provide. This is so that we can stay focused at being the best at what we know and not venture into other services that we are not qualified in. We are statewide and have the best behavior consultants spanning all 92 counties of Indiana, providing behavior services for almost 1000 individuals that we are fortunate enough to serve. When this is published, we will likely be approaching or have reached 100 behavior consultants across

Indiana. Our primary mission is to do the best by the behavior consultants. Then they will do the best by the individuals we serve. That is how it should be.”

One thing I have been wondering, is how have you managed to pay Behavior Consultants (BCs) so much more in comparison to other companies in your industry?

“Ah yes, I get asked that one frequently. Simply put, I think they could pay more, but do not. In this very specific industry, I believe we have also identified a lot of unnecessary expenses that are made and cut them out. We serve the Home and Community-Based Services (HCBS) waivers and that means we provide our services in the individuals’ homes or with them in the community. We do not have a need for large buildings or offices which go unused. A typical day as a BC starts from home, then the BC goes out to see some of their individuals that day, then returns to their home to complete their paperwork. Occasionally they may need to hit the office for some printing, but we phased that out by paying everyone better so they can access printing right from home. SBS has modernized its service delivery and cut back on so many conventional, but unnecessary expenses, which directly turns into higher pay.

The reimbursement rate for our service, from the Medicaid Waiver, is $72.80 per billable hour and was set back in the early 2000s. We certainly feel the industry is due for a rate increase after all this time, but it has not happened yet. So, to lead the way and set a higher standard of pay for BCs, SBS pays clinicians up to 90% of the reimbursement rate, which is $65.52 per billable hour. We pay the best because it is the right thing to do and we pay in percentages, so when the reimbursement rate goes up, the BCs pay will also go up.”

Without a central hub, like an office, how are you creating a sense of community for the Behavior Consultants of SBS?

“I must admit, with as many clinicians as we have and how we are spread across the entire state, it can be difficult. I will say, to bring team cohesion together, the wonderful Regional Directors at SBS work on various ways to stay connected, like smaller team meetings. We also put on regular trainings and workshops the whole company is invited to, but not obligated to attend via Zoom. Additionally, we created the

Indiana Behavior Association, a professional association for behavior consultants from all agencies to come together for monthly continuing education units (CEUs) and for quarterly association meetings. Truthfully, it does vary. There are BCs that want to be more involved and there are those who want to do their own thing, they do their job, complete their paperwork, and they are good. We treat master-level clinicians with the dignity, autonomy, and respect they should be treated with. We let them decide and we really see them thrive in this environment we have been lucky enough to create.”

Okay Joaquin, tell me what sets SBS apart from the hundreds of competitors in Indiana?

“One of the things I pride myself on, is the fact that I am still a practicing clinician. Although being the executive director dominates my schedule, I still serve individuals and write behavior support plans. Every director at SBS is a practicing clinician that sees individuals, writes plans, and is in the field just like all of us. Currently, we do not have anyone working for SBS that is not a clinician. That is what certainly separates us, everyone is in the field, they see what is going on, they know the difficulties, the barriers, and the wonderful things happening out there. I believe because of those things, we are outperforming, outinnovating, and out-recruiting our competitors.”

“I also have been very outspoken about the use of non-competition clauses and restrictive covenants that many of our competitors use. We do not and will never bind any of our clinicians or families with these highly problematic covenants. A family here in Indiana could be working with a great clinician for the last 5 years, having made great progress with their child, but the clinician may be struggling with low pay as costs of living continues to rise. If that agency is not paying well, the behavior consultant may look elsewhere to continue to practice and be paid significantly better. But then the family receiving services will lose this clinician because of those restrictive covenants (and agencies often send cease & desists, threatening to sue the BC). Families should ask agencies if they use these restrictive covenants when selecting an agency so they can make truly informed decisions. These practices have been long standing and negatively impacting the Indiana disabilities industry for years. We are working diligently to usher in a better and more equitable era of behavior management services for Indiana.”

SBS is a proud member of the Indiana Behavior Association. (www.IndianaBehaviorAssociation.com).

Business Contact Information

765-337-1895

108 W. Washington St. Waynetown, IN 47990 https://www.supportivebehaviorservices.com/ SBSMain2020@gmail.com

HERE TO HELP YOUR FAMILY THRIVE & SURVIVE THROUGH YOUR NEXT MOVE.

I would love to introduce you to my family. My husband and I are Drs. James “Jim” and Darolyn “Lyn” Jones, and our son is Will. Will is 19 and has cerebral palsy and autism. He attends Hamilton Southeastern High School and is in the Functional Independence and Transitional Skills (FIATS) classroom. The FIATS classroom is designed for students with severe and profound needs. Students like Will, who are in this type of designated least restrictive educational environment setting, typically have complex medical needs. Will’s Individual Education Plan (IEP) states multiple disabilities, which requires him to receive multiple interventions.

Because of Will’s multiple disabilities and classroom setting, he can remain in school until he is 21. Will receives physical, occupational, and speech therapy through the school. He also receives weekly occupational therapy at home and, in the summers, weekly physical therapy. And this summer, he will begin recreational therapy.

Will enjoys going on walks. He loves playing with VCRs, playing videos, rewinding them, fast forwarding them. Will likes to bowl and to be read to. He loves to sort. And he loves company, someone to sit and engage with him. Will’s happy place is spending time at our family cabin, where he has a special VCR play area set up.

My husband Jim grew up in the Chicago region, and I grew up in three different communities in southeastern and southwestern Indiana. My family moved around often, and the longest place I lived anywhere was for five years. However, I have lived in the greater Indianapolis community now with my husband for almost 25 years and in my current home in Fishers for 18 years. This is the only home Will really remembers or knows, and we built it to accommodate his needs.

My husband and I have endured many challenges and struggles with our Joy Boy, Will. We waited to get pregnant and then, once pregnant, did all the right and healthy things. I had a storybook pregnancy — up until it wasn’t.

When we got pregnant, it was after 9/11, and my husband was an Infantry Combat Arms officer in the Army Reserves. He left his corporate position as a senior project engineer to take a military position with Ball State University’s Army ROTC to help train future soldiers — the country was actively sending many men to the Middle East to fight. Jim was also in command of his own Indiana Army Reserve unit.

Because we were expecting and making life and career changes, we sold our more expensive home, bought a simpler one with the hopes that I could stay home, finish my doctorate and we could lead a simpler life with a new baby. But when my husband was out in the field, and I was in my 32nd week of pregnancy, I woke up one morning, ate breakfast, and the baby wasn’t moving — something he always did. My doctor had me come in, and they sent me immediately to the hospital because while Will was still alive, his heart was racing, and he still wasn’t moving. By the time I arrived and was hooked up to a monitor, the baby had died. They heard a faint heartbeat, and then they didn’t.

I had an emergency C-section with half of my clothes still on because there was no time to prep for this emergency surgery, and after two Apgar scores of 0 and a hematocrit level of only 16, Will scored an Apgar of 1. A normal hematocrit or red blood cell count for a newborn is between 45% and 61%. Will had bled out in utero. He was the sickest baby in the NICU. He was born at 32 1/2 weeks, weighed in at a little over 6 pounds and was almost 19 inches long. My mother had very large babies, so his larger size was something that did help him survive. My husband did not arrive at the hospital until much later that day of his birth. Red Cross was trying to get him out of the field and back to us. When he arrived at my bedside, he had tears in his eyes, the only time I have ever seen him with tears. I told Jim I named our son Will— for will to live. And the name fits him because he has a strong will--- in so many interpretations and iterations.

After that Apgar of 1, Will had to have multiple blood transfusions, and his lungs weren’t fully developed. Every limb and orifice of his body had a line or tube running in and out of it. He was on an oscillating vent that breathed for him. His brain scans showed Burst Suppression Syndrome (BSP), no brain activity. At day 14, they told us we would have to make the decision to stop the vent because no meaningful recovery could ever be made past that point with the amount of time he had been on this kind of vent.

But on day 12, ironically, miraculously, blessedly, on Mother’s Day, he was able to move to a CPAP oxygen machine and was taken off of the vent. It was the first time I held him, and it was only for 15 minutes. It remains the very best Mother’s Day gift I have ever received. And the brain scan came back that same day, indicating no Burst Suppression Syndrome. The doctors determined that the initial BSP was a disruption in the brain caused by the lifesaving medications he had been given post-birth.

We knew then that Will was in there, somewhere. The doctors told us not to get our hopes up. After his birth, we were told he wouldn’t survive the night. And then, when he survived the first night, every day, we were told not to expect the next. Those were dark and difficult conversations my husband and I had to have. I had to remain in the hospital for eight days due to complications and to have 64 RhoGAM shots because I was RH negative and Will had bled out in utero impacting my own blood cells. However, I went downstairs to the NICU to be with Will and talk with the doctors and pump breast milk every day. Even when released, I drove an hour each way every single day to be with him, lugging my very sore body and breast pump machine, bottles, and cooler with me. I spent 8-10 hours every day with him and never missed a single day of the 39 days he was in there. My husband, then back from duty, would come after he had grabbed some dinner and stayed with Will in the NICU returning home around 10 p.m. after working 10-hour days. This was our routine for those long 39 days.

When we left the NICU, Will’s prognosis was still not good. Born dead, part angel/part boy, we had to figure out how to help him get out and grow and be who he was going to be. We grieved who he would have been while at the same time finding joy in who he could become. The doctors told us he wouldn’t live 6 months, then a year, then three years. And then, oddly, one doctor said he wouldn’t live past 8 years. He is 19 and still here, loving, living, and learning.

But his birth/death came with consequences. Will has had 39 surgeries and procedures in 19 years. He had seven therapies a week for the first three years and then three to five therapies a week until he was 16. After a certain point, insurance just wouldn’t cover his therapies anymore, so now we privately pay what we can and rely on the excellent therapists he has at school. His school physical therapist, Deb Gastineau, has been with Will since he was 3 years old in developmental preschool. They have a special relationship.

So much about caretaking Will and raising Will has been hard. Fighting for the best doctors and surgeons and therapies and school services and resources — it’s never-ending — is both simultaneously exhausting and rewarding. But we wouldn’t change anything. Because of Will, my husband and I are better humans, better parents, better Christians and better friends to others.

Because of Will, we changed our professional careers and directions, opting to move into higher education and becoming professors, something neither one of us ever thought we would do. My goal was to finish my doctorate and work as a curriculum specialist; my husband wanted to go back to the Army full-time. Because Will transformed us and gave us purpose, we wanted to also transform — to pay it forward. Going back to school in your late 30s and early 40s with a sick baby was not easy. Money was always tight. Will was born before Obamacare and 39 days in the NICU plus all of the medical and therapy expenses afterward, me not working for six months and Jim taking a reduced salary in the Army compared to what he made in the corporate world made living this new simpler life even more burdensome. But we got through it. I look back and am not sure how, but we did it. We were younger and had more stamina and didn’t know any different, I suppose.

And when we earned our doctorates and took our positions at Ball State University, I opted to work as a nontenure line contract faculty member, which means I have much more flexibility and do not have the same kinds of commitments my husband, who is a department chair in the College of Architecture at Ball State has. I have a flexible schedule, and I can still be a