Support for autism families
Good morning everyone. In today’s blog I want to start the conversation on which states are best in providing support to autism families. In March of 2019, Autism Parenting Magazine published an article entitled “The Most Supportive States for Raising a Child with Autism” (link below). This article outlines some of the difficulties we autism parents face when it comes to financial matters related to autism. What was interesting to me in reading the article is that all states have laws that require insurance companies to include autism treatments, but many states have age and maximum dollar amounts of coverage–which makes no sense to me at all.
Ranking States
Ranking in states, including Washington DC, were based on state coverage, if the state was included in the Autism and Developmental Disabilities Monitoring Network (ADDM) and if grants were available to autistic children and their families. Which were the top four states–drum roll please
1. California
2. Massachutes
3. Indiana
4. Colorado
None of the above listed states have a limit on age or dollar amount for insurance coverage. Maryland, where me and my family live, came in at number six. I am grateful to have access to Kennedy Krieger Institute and the autism resources available in my state but difficult decisions have been made in regards to my career and our finances in order to provide Jayson with those resources. The bottom four states–drum roll please
48. Montana
49. West Virginia
50. New Mexico
51. Idaho
Sad truth
I have to be honest in saying that reading this article made me very upset. Our children are suffering from a chronic medical condition and their outcomes are dependent on which state they live in. It has been proven over and over again that early diagnosis, early intervention and ABA services significantly impact a child’s life and may determine whether that child can have a productive life or be debilitated forever. My question is why the disparities between states? A standard of practice should be instituted across ALL states so that our children are NOT left behind. Yes, we have come a long way in recognizing autism and early diagnosis, but we have a long way to go to ensure that ALL children have equal access to care. Please comment below and let me know what your experiences have been like in your state. I wish everyone all the
best.
The Most Supportive States for Raising a Child With Autism
https://www.autismparentingmagazine.com/supportive-states-raising-autism-child/
May God bless you!
Love you all,
M.J.
I’ll further support the disparities indicated. New York- a top 5. However, is the data referring to NYC or Upstate? Frankly, the rural area of NY is very different. So, perhaps dividing the state at the Hudson River would benefit Upstate to be apart. However, NY is good. In Rochester- my son who is more on the severe behavioral and delay end of ASD, has been without any comm-hab or in-home behavior aide since 2017. He also has been on the NY OPWDD Emergency Pri-1 Residential Group Home list since 2017. No opportunity for youth age needs we are told. The problem we are told is that those who “aged-out” of the group homes for youth have no new place to move, as there are no new adult age group homes being constructed. So, those indiv. deserves a good place to live- so to move them take consideration and time. Also- NY is not building any new group homes for kids to 18 y/o. So there’s a bottleneck, stuck waiting. The Direct Support role is a crisis here like most everywhere. These vital professionals are scarce. Very few going into this profession due to a myriad of common sense reasons…one being low pay for the responsibility…cashier at McD pays better, less risk. As there are so few available- I think the agencies cherry pick workers for cases. I can’t prove this, just a possibility. To retain your workforce, wouldn’t you want to keep your staff happy? Perhaps, the staff they have available is not able to handle certain more severe individuals with needs? I’m sure that’s probably the case. Those I’ve met in the agencies are really good people. But- still we’ve been without. This fatigues the parents and other family members, as well the behaviors increase, regression without an available DSW to assist a few times per week. As this being one factor, the other what I believe was mismatched meds prescribed, my son’s behaviors became intense to the point of being unsafe to himself and others. The impulsivity, explosiveness, property destruction, and bolting were frequent and every day. This behavior led him to admittance to Kennedy Kreiger Institute NBU program in Baltimore, MD in 2017. Once completed their program, and with diligent effort for 4 months by our assigned social worker- she/we could not secure any in-home resources from OPWDD, or any local agency in Rochester. Again, without the 70 hours of support they recommended or a fraction of it, my son slowly regressed, and his behaviors returned at home. Again raising the level of dysfunctional behavior to unsafe. He averted permanent serious injury to himself with close calls, his younger siblings affected- creating an unsettled, and unhealthy family environment. (as many of you know how it can get). Still with reports of crisis, no in-home available here. Again, it went on until Jan. 2020- when I couldn’t wait on NY any longer. He was admitted to Bradley Hospital in Providence, RI CADD program. He was inpatient for 6 months. They stripped his meds, and rebuilt the regimen with new meds. He left Bradley, and then went to Buffalo for a stepdown Intensive Treatment Program. He was there for another 6 months, phasing back into our home slowly. Upon discharge, again no residential opportunity, no in-home aides, no behavior techs available in Rochester. We are in better shape this time as state agencies are stepping in to provide support in this gap, so this post-hospitalization is not another repeat. We do have one commitment from an agency which my son has been on a waiting list for their program for close to 5 years. During this time, I went up the legislator ladder, contacting first our local rep during the crisis time. I knew other families in NY were facing the same roadblocks we were. First- Sen. Morelle- staffer had understanding- said “NY in a chronic issue at the state-level with disability funding…not going away anytime soon.” He said he would relay message to the Senator, never heard back. I contacted Marjorie Burns, NY Rep. She did contact me- but unaware of any action taken she may have taken at the state-level. I contacted Sen. Schumer’s office. His staffer said he would let the Senator know. I contacted his office via Email as well. Never received a response. Then, I contact Gov. Cuomo’s office. Staffer answered- same thing. I’ll let the Gov. know. No response. I contacted his office by Email 3x. I believe his office contacted the Rochester OPWDD office, but can’t confirm that. The legislator which made the most effort was Sen. Rich Funke. His Chief-of-Staff was concerned and help as she could. Sen. Funke also personally wrote me. I sincerely appreciated that effort! Too bad he is retiring. I contacted local TV stations requesting they contact me about this crisis. Nope- never received any callback. So- NY is better than some states, however they are busted up here. These are good people- officials I am working with- but it seems they are hamstrung by limited resources, a broken system on the residential group homes, and state inability to address this crisis head-on…I don’t know. However, the Feds provide a bulk of funding which I’ve understood is siphoned off before reaching NY. Not sure how that works yet. But- returning disabled people from the horrors of the institutions back to their home community to be served was a good idea, but no follow through to ensure it would work. Many of the people in those institutions were there for a reason. Many need an intense level of care to be successful. Some families just can not provide that at home. So- by not ensuring that the demand for Direct Support was managed and insured by a healthy structure to support the wave coming back to the local communities, it was bound to fail. And, not continuing to fund and develop a robust group home network for those who legitimately need that level of care seems short-sighted. But to someone- I’m sure the immediate dollar savings looked good on paper. So here we are in 2021. If many of you recall after the 9/11 attacks in 2001, the Dept of Homeland Security was created. They needed to create Airport Screeners positions, and a lot of them! How’d they do it? Plan and build-out a career field for the position which would attract people to the job. Good pay, benefits, career training, etc. Not perfect- but they got it rolled out. I see a pilot program like this needed. Use TSA as a template. Collaborate with universities, gov’t agencies, etc to make the Direct Support Professional a desirable career field. Right now, its not. The need for those to assist the disabled is one “slice” of the pie needing these services, but the elderly, and other populations require these valuable workers. I see this as a vital step forward in all states.
I also wanted to comment on our experiences living within the New York system. I can assure you its much better than our beloved North Carolina! We left Raleigh in 2012. Early Intervention in Wake Co. for a newly diagnosed child- 3 hrs per week? My wife and I went, “What’s Autism?” We have learned and loved our incredible son, and blessed to have him in our lives. What’s amazing to me in Raleigh- its a highly educated and high-tech area. Duke, NC State, and UNC only 10 minutes from each other? The big hitter industries located in Research Triangle Park. I would have thought NC would have a better system for individuals and families with Autism in the schools and therapeutic services. I was surprised of the lack when we lived there prior to 2011. Hopefully, they are better now- as we loved NC. From Raleigh- travel East sitting on the sand at the beach in about 1 hr. To the West- Blue Ridge Mtns. Charlotte…new city. We loved living and working there. However- nothing for disabilities- we had to move to a better area. NY was better- but perhaps they have tapped-out the last few years. One interesting thing- is when my son was admitted to Bradley, of course I met other families whose children were being treated at Bradley- some at Hasbro in Providence. I was surprised to find so many families from NY had to leave the state for the intensive medical program that was not available to them in their own home state of NY. Here you have Big New York state, and little Rhode Island is serving their citizens (along with many others). No intensive treatment programs in New York state for Autism or other KKI NBU or Bradley CADD type program. How can that be? Major regions in New York- Buffalo, Syracuse, Albany, and NYC. Not one place to take your child for intensive treatment? In the last couple years two programs have started in NY. However, they are not to the level of KKI or Bradley. I find that no program has existed in NY before the last two years! Overnight Respite providers are very hard to find in Rochester. There are couple houses for this, but you can imagine the demand to book at night. Which it was. Then throw COVID in the mix, and it becomes a much bigger challenge. It will be interesting to see where the Fed funding for “disabilities” in the Biden Covid Relief package will filter too? By the time the funding runs it course and reaches the local level, will it look like the Colorado River in Yuma, AZ? Dried up?