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March is National Intellectual and Developmental Disabilities Month.  “Time to Talk About Mental Health” is dedicated to the issues of families with IDD diagnoses.

Here is one family’s experience, typical of many.

“As I sit here typing this article, I’m exhausted. Over the past 20 plus years, I have had to learn a great deal of information about the services and supports that are possible, but often unavailable, for persons with Intellectual and Developmental Disabilities. It has not been easy to find this information, because there are a variety of systems designated to offer help, but they don’t know much about each other or how to connect families to the services and supports they need. Often, first encounters are with medical professionals, then psychological or behavioral health agencies be contacted, and the school system often has a primary role for years. I offer this insight to enhance awareness among the public.

“Just over 5 years ago, my family relocated back to North Carolina. I say back because I was raised in a metro city in the state as well as my oldest daughter. In that city, the schools were not great, especially for special needs. At 4 years old, I enrolled my daughter into the pre-K program based on a recommendation from the local assessment center. All I remember from that meeting was a professional member of the team stated that my daughter has ‘possible retardation.’ We had gone to the pediatrician for a normal checkup and knew that she wasn’t hitting some milestones. The doctor provided a referral for tests. I was a single parent who had a lot of support from my parents. We didn’t have any history of any sort of delays, and I thought time would allow her to catch up. Not one time did anyone mention to me any long-term support options. We would use speech therapy at the day care she was attending. I tried reaching out to the pediatrician and he was out on indefinite medical leave. I begged the nurse to have him call me back because I simply did not know what to do. He did call and agreed that she just needed more time. He did mention that he did not think she had Autism. That is the first time I had even heard the word Autism but didn’t explore it because I trusted his knowledge.

“When elementary school came, and I would get calls about her not wanting to come out from under the table to get speech therapy. She wouldn’t adhere to the routine in the classroom. In IEP meetings I would hear great things about how she was doing. Then having them speak to me about her repeating that grade. First grade was combined into one class which meant her class was 48 students, but it was great from the school’s perspective because they would have 2 teachers teaching the class. Then, I decided to hire an advocate because the concerns I had about my daughter’s education and the direction that the school was taking were not in sync. The school threatened to take my daughter’s speech therapy away even going as far to tell me they would have the meeting without me. My husband and I decided to move to the next county over with hopes that the ‘better school’ would hear our concerns and get my daughter on a better path. We had our advocate help us with the transition to the new county. While it was better for a little while, the school recommended she repeat third grade to allow her more time to catch up. Not one time did anyone ever mention a waiver, a program that would cover services, or other supports that she would qualify for outside of school. We went to the Carolina Institute of Developmental Disabilities in Chapel Hill after a neighbor of my mom’s mentioned it to her. We had thorough testing, but no clear diagnosis and they recommended we get assessed at the UNC TEACCH Center for Autism. There was a wait list.

“In December 2012, my husband took a job in another state. We did interviews with the school system, traveled around the city and did as much up-front research as we could before deciding to move. I was leaving my parents and friends who were my support system. As we knew we were moving to another state, TEACCH reached out to make an appointment. I had some hesitation because of the move but decided to move forward. Although we suspected Autism by this time, this assessment confirmed it.

“Once in the new state, the new school embraced my daughter, and she showed great growth. Her teachers loved her and by the time we got to middle school we got to a point to pursue either path of diploma or certificate. We chose a middle road of having her in a small class with like peers that the school district was piloting. My husband and I decided again to move to a county where we felt she could have more opportunity and the schoolteachers agreed that they thought she would be fine. We slowly integrated her more and more with mainstream classes. We had her involved with Special Olympics and were able to get her on a waiver program that allowed for more intensive support. Among them were Applied Behavioral Analysis therapy, Community Living Support, and Respite. Since she now had Medicaid and under 21, she also qualified for EPSDT services, which gave her Speech, Occupational Therapy, and Physical Therapy. She did start showing signs around puberty of some behavior challenges, but everyone indicated it was part of the Autism. The ABA therapist and I spent a lot of time trying to document events to see triggers. We never came up with anything solid. When my daughter was 18, we did some genetic testing which led to validity that my other two children should be tested. The testing showed a multi-duplicated chromosome that is known for Autism and ADHD like symptoms.

“Fast forward to 2017 and we are considering a move back to North Carolina. Although I left my mom and dad behind in a major city, based on my experience with the schools, I was not willing to locate there. Instead, we chose a town that I visited quite frequently as a child and have distant family. My thought was that I would get some support by being so close to family and would be able to build relationships through them. Unfortunately, these relationships remain distant, but a few will help in an emergency.

“As we prepared for the move, my oldest daughter lost a lot of daily life functions. She couldn’t really talk, needed assistance with activities of daily living that she had independence over, and didn’t sleep for 4 days straight. Our move was discussed with her, and we emphasized how we would be much closer to family. We went to two different ED’s and both would not check her in and told us it was due to the stress of moving and would get worse before it would get better.

“For the past 5 years our lives have progressively gotten worse. I tried almost daily for 5 years, since before we even moved, to understand the system and to have help in place for her.  We spent three years working with a Cardinal Innovations’ (then the LME/MCO) membership specialist. She would encourage me to call the CRISIS line where they would come out and deescalate a situation. Every time we called, it boiled down to if she was going to kill herself or someone else. Her physical aggressiveness nor my children’s mental health mattered. We once tried to take her to an inpatient facility, and she was willing to go. We were turned away because it was deemed an unsafe environment for her. I tried calling a more distant major hospital, and they told me they would not take her, and they were not taking any outpatients without referrals. We were able to get her some services such as respite but being in a small county and during COVID, the providers and their capacity to serve are limited. When we were utilizing Vocational Rehabilitation, our case manager was generous in sharing a link to Medicaid providers. I also had a community Navigator at the time who checked into therapists she could find close by. We finally obtained someone for my daughter to talk to and concluded that my daughter had PTSD like symptoms.

“This led to an additional diagnosis in another category; mental illness, which opened more doors for getting her some services. The membership specialist then mentioned a committee of advisors that the state has, and each area of the state has representation on the committee by county and disability. It is referred the Consumer and Family Advisory Committee to the Local Management Entity/Managed Care Organization. Joining CFAC was a gift. It introduced me to so much information such as public meetings hosted by the State Dept of Health & Human Services and people who want to help the disability community.

“As for my other children, they continue to have some support through an IEP at school. However, it is not enough. My son had also obtained Medicaid services through the same waiver my oldest daughter received as mentioned above. I don’t think enough people realize that providers outside of the school can work on so much more than the therapist can in the school. Not only will they get more time, but they will also receive services that schools can’t address due to the academic nature of school. The problem for many families boils down to not knowing and the need for insurance or out-of-pocket money to cover the costs. When on Medicaid, these services are free if you can find a provider that accepts Medicaid. Behavior therapy has also been a challenge. We are a family that has private insurance but there is a shortage of providers and waitlists are long.

“In March 2022, my husband had a stroke. I had family from out of town coming here to help. There were prior discussions about my daughter going into a supported living apartment. On April 1, I moved my daughter into the apartment in the morning and brought my husband home from stroke rehab in the afternoon. A medical crisis such as a stroke should have triggered the LME/MCO to investigate an emergency Innovations Waiver slot. This would create a budget for my daughter to have all the services she would need for the rest of her life. When I called from the hospital to let the LME/MCO know what was happening and ask if my daughter would now get a slot, the response was no, that I was still the caregiver. The state only allows 50 emergency slots across the state every year.

“At the end of August 2022, my daughter moved back home. This was necessary because the agency was not able to provide the services she needs. Unfortunately, she went into crisis to the point of feeling suicidal. It took nearly two weeks to get her admitted to a hospital. The hospital stay was traumatic and has highlighted more flaws in the system. She was there for 12 days, and we haven’t had Medicaid provider services since. We have recently plugged into Solutions for Independence for both my husband and daughter. We are hopeful they can help us.

“I hope that this article reaches many families, and they know they are not alone in this journey.  If you want better for our community and our state, I encourage you to reach out to our government officials.  We need a lot of voices to let the state know that we need support and with the Innovations Waiver having a 10+ year waitlist and a shortage of providers and staff, our families are in crisis. We have more individuals waiting than being served across our state. Davie County is severely underserved with 3 slots being awarded out of the 1,000 the state agreed to fund over the past couple of years.”

You can join the Davie County Mental Health Advocates by contacting missjulieysl@gmail.com; or contact our state level members of the NC General Assembly: Rep. Julia Howard for District 77, 330 S. Salisbury St., Mocksville, 336-751-3538, Julia.Howard@ncleg.gov; and Sen. Steve Jarvis for District 30, 300 N. Salisbury St. Rm. 410, Raleigh, NC 27603, 919-733-5743, Steve.Jarvis@ncleg.gov.