Our son, DW, age 16, is diagnosed with severe autism with intellectual disability with an IQ of 42. He still wears pullups because he is not completely potty-trained and speaks in 1-3 word utterances.
EARLY LIFE AND DIAGNOSIS
In kindergarten, our son was placed into a district-wide program for autism call SECEP. He was in a SECEP classroom within the Chesapeake Public Schools.
SELF INJURIOUS BEHAVIORS, AGGRESSION, AND MEDICINE FOR THE FIRST TIME
In 2010 at 8 years old, he started showing signs of self-injurious behavior and some minor aggression. His primary care doctor recommended and prescribed him Risperdal during the day and Seroquel at night. Risperdal is one of the only 2 FDA approved drugs for Autism. He always had a little bit of insomnia. Seroquel was in the same drug family as Risperdal but had a sedative-like effect so it helped for nighttime and sleeping. This helped for a while, but eventually as he got older and as we reached maximum safe doses for these drugs, they became less effective over time. One day, while the school was having issues with him, he came home with a bruise in the shape of a handprint on his arm. We called Child Protective Services on the school. The result was “abuse found; abuser unknown”. Towards the end of 2012, he was moved from that classroom to the main SECEP facility due to his behaviors. He was 10 years old and he was becoming very aggressive at this point towards others (biting, hitting, kicking, hairpulling, etc.).
FROM SECEP TO RIVERSBEND
His behaviors and aggression became too much for the SECEP program to manage. They kept in in a 10 x 10 room by himself all day and were not teaching him anything. His teachers would wear what reminded us of thick dog-training suits to protect themselves from being bitten. It broke our heart. That was the last straw and we had to get him out of there. Because the school district could no longer manage our son's behaviors, by law, the City of Chesapeake had to fund his education through a private school for autism. In the summer of 2013 he started at Riversbend Academy in Suffolk. He was 11 years old. Riversbend Academy’s program helped a little. During this time, his behaviors came in waves but eventually over time and despite multiple ineffective behavioral drug treatments later, his behaviors became more severe than ever.
MEDICAID AND EDCD WAIVER
Around this time, we also were able to get him on VA Medicaid through a waiver that was not income-dependent. This waiver allowed us to hire an in-home caregiver to assist and be paid hourly by the state. We were able to get Dakota’s maternal grandmother to be this caregiver and she would come over about 30hrs a week to try to assist. She could only do so much though if he became aggressive because of her age.
COMPASS IN-HOME SUPPORT
Also, that year in 2013, the City of Chesapeake also funded an in-home treatment for our son to help manage his behaviors. This company was called Compass. This was in addition to his grandmother being a part-time caregiver through VA Medicaid. In-home treatment though was not effective as these agencies cannot get involved for liability reasons when our son had a meltdown and goes into attack-mode. They are good for assisting with things for adapted living skills, or offering useless advice.
After several months of in-home treatments and with no improvements, Compass and Riversbend Academy both agreed that he needed acute hospital care to get his behaviors managed/stabilized and to find a medication regimen that could help him. We applied to a well-respected treatment center owned by John Hopkins called Kennedy Krieger Institute in Baltimore, Maryland. While we worked through the application process and waiting list, we prayed he would be accepted. During this time, Dakota was at his worst. His Primary Care doctor was consulting with a developmental psychiatrist by phone, since that same psychiatrist had a 5-month waiting list. We were desperately trying to get his behaviors under control. I refer to this time as “medicinal roulette” as we tried many different drugs to try to calm his aggressions. One drug, Zoloft, made it worse to the point he was manic and almost completely out of control all day long. During one violent episode, he suffered a hematoma on his ear. Less than a week later, they operated on it to drain it. It was outpatient surgery. That night in his room, he pulled out all of the stitches on his own. We were forced to let it heal on its own and hope that his ear wouldn’t heal too disfigured.
FROM RIVERSBEND TO KENNEDY KRIEGER INSTITUTE (KKI-JOHN HOPKINS)
Our application was finally approved and accepted by Kennedy Krieger Institute. Since they would not accept Virginia Medicaid, we used our private insurance, Aetna. He received treatment for 4 months. Not only did Kennedy Krieger manage/reduce his behaviors, they created a very effective behavioral plan. They also found the appropriate medication he needed at the time. The purpose of his behavioral plan was to give a demand and follow through on the demand, which requires a lot of hands on if he doesn't comply. Kennedy Krieger used a very data-driven approach to solving his behavior issues. They had 2 separate teams: the behavior team and the medicine team. The teams did not share any notes because they didn’t want one team’s conclusions to influence the methodology of the other. The behavior team did assessments to try to determine the root cause of certain behaviors and effectiveness of different behavioral approaches and took data hourly on the results of their attempts. The medicine team did really the same thing but from a prescription drug approach. Then there was a doctor above both teams that reviewed the notes of each team and that doctor is who offered advice to each team throughout this process. This was John Hopkins and the best facility in the world, and they were very effective.
BACK TO RIVERSBEND
After his discharge in July of 2014, he came home with the expectations of keeping up with this behavioral plan and having the in-home support to be able follow it through. We were able to get his grandmother setup as a part-time caregiver again. We also were able to get in home support from Compass reengaged. Also, staff from Kennedy Krieger came to our house to help us modify the behavior support plan for our home. The behavioral plan was extremely effective for a while post discharge. However, after several months and many adjustments, this behavioral plan became difficult to follow. Some of the reasons why it became difficult was the in-home support, Compass, couldn't be as hands on as we needed and his strength was surpassing his Mom's strength as he got older. The behavior plan works best with support to be able to enforce the demands placed on him when he doesn’t comply. While Dad could effectively handle him strength-wise, Dakota got out of school around 2pm and Dad got home from work about 6pm. That created a period of time daily where Mom was home with 2 other kids with no one to physically help or intervene with Dakota if needed. This led to the plan becoming less effective in a home environment. The reason it was less effective was because it could not be implemented in a consistent manner and consistency is the key to successfully implementing this plan.
COMPASS IN-HOME SUPPORT QUITS
So after about 6 months of being home, at the end of 2014, we lost the in-home support because of liability issues from being in situations when they had to be too hands on. At this time, we reached out to the City of Chesapeake for another in-home treatment but they had no other services that could help him.
RESIDENTIAL FOR THE FIRST TIME – HUGHES CENTER
During this time, we also got him approved for another Medicaid waiver called the ID Waiver, but none of the services offered through this waiver were the right treatments for our son. We tried to manage Dakota's behaviors at home as long as we could which was all of 2015 (roughly a year), but it was becoming a major safety issue with the other kids in the home and to himself. We had to make the most difficult decision a parent has to make and decided for him to go into residential. We had him admitted to the VA Medicaid funded Hughes Center in Danville, VA in late December 2015. After 8 months he wasn't improving at the rate we were hoping. We felt he was just “put somewhere”. Since he wasn’t getting better at the Hughes we felt what was the point. We believe the reason why he wasn't improving was because they were not able to follow Kennedy's hands on behavioral plan due to restrictions placed on them by state law and VA Medicaid, and possibly their own company’s policies and liability concerns. During his stay at the Hughes Center, Riversbend Academy went out of business.
FROM HUGHES CENTER TO CLOSE BY
Then we discovered an intermediate care facility that was a VA Medicaid funded group home, that was also close to our home that seemed promising with a new behavioral approach we hadn't explored yet. They could not follow the Kennedy Krieger Plan either, but with it being 10 minutes from home, with Hughes Center not working, we thought we would give it a try because we thought, “We have nothing to lose and at least he will be closer to home”. He entered this placement in August of 2016 and Dakota started going to Plan Bee Academy for his school.
Unfortunately, after 9 months a psychologist sent to observe Dakota, recommended that Dakota needs to be in a Residential Treatment Facility versus where we was currently staying.
CHALLENGES WITH FAPT AND CSA
We searched our entire state for another placement for our son but we ended up receiving all denial letters for potential placements. We also received denial letters to all out of state Medicaid funded options. All other instate options are disqualified based upon their own self-published admissions criteria (like minimum IQ level as an example of one such criteria). The only options we have left are placements that only take municipal city funding and getting funding approved has not been easy. If we had a choice, we would want Dakota to have a Kennedy Krieger like experience, but one that lasts much longer than the 4-month experience he had, so that the good behavior habits have a chance to “bake-in” and actually last. The Kennedy Krieger plan is the ONLY behavioral plan that has been proven to work and work great. That way he can come home and be successful at home behaviorally before he becomes an adult. The local placement has assisted us by extending the discharge date from the original discharge date of June 30th, every month by 30 days, knowing we have been trying to work with the FAPT Team and various city agencies to find another placement. We have even engaged Senator Lionell Spruill Sr, and Delegate Barry Knight. They have tried to help but we have done one big huge circle from Chesapeake, to state-level contacts and resources, and back down to Chesapeake, and the CPMT still refuses to fund another placement. After all of this, on November 17th of this year, they denied us again! All the while, the final, immovable discharge date for our son, Dakota is set for December 30, 2017. If and when funding is finally approved, we will still most likely be put onto a waiting list. We are still trying to figure out what we are going to do in the meantime, because we KNOW this state does not have adequate in-home support options. We have been there and done that.
On November 27, 2017 we admitted Dakota to Cumberland Hospital. This is an acute care hospital in New Kent County, Virginia. He is authorized by our private insurance to be at Cumberland for 3 months, so we have just over a month left to still find an appropriate treatment facility for him upon discharge, unless insurance approves a small extension to that 3 months. STILL the City of Chesapeake (FAPT and CSA) is seemingly unwilling to do the right thing as mentioned above. Please continue to share Dakota's story!
Dakota is still at Cumberland. Since the dispensaries are not setup yet, we cannot take advantage of the recently passed CBD legislation until they are. Since the last update on 1/18/2018, my private insurance, Aetna, has stopped paying for Cumberland and Chesapeake has picked up the tab. That said, earlier this week Cumberland gave us a hard deadline for Dakota to be out of their facility by September 14th. They base it on getting him "stable" behaviorally, but all they have done is overmedicated him with Thorazine. I say "overmedicated" because he is kind of out of it, not quite zombie-like but really out of it and zoned out. Plus it is leading to an unhealthy weight gain. He has gained 40lbs in 6 months, most of it since he has been on Thorazine which has only been the last 5-6 weeks I believe. This medicine is still not good for the liver long-term so this "stability" is superficial because his underlying behavioral issues have not been addressed. As soon as we go to wean him off this medicine which we will have to do at some point if the unhealthy side-effects continue at this pace, his behavior will undoubtedly pick back up. He still has issues eloping too which is problematic so we don't understand why they aren't waiting until we can find a residential treatment center to step him down to. It is not like we haven't been trying to fight the city to do so. It is not like we are taking our time. We want him home, but he is not yet ready to come home safely. We are still trying to figure out what to do by arranging for in-home help in the interim, etc.