The Long and Winding Road to Medicaid

Nathan was recently approved for Medicaid by New York State.  Because he has autism, he is entitled to certain services.  The process took a long time- years actually.  Part of that is my fault, part of it is the fault of the system.  Here is our journey.

Nathan was just 5 years old and in pre-school when he was
determined to be eligible for services

Nathan was originally determined to be eligible for services in the spring of 2010.  Children under the age of 7 (Nathan was 5 at the time), are given a provisional eligibility, because some kids "grow out" of their disability.  A few months after Nathan was found eligible, we moved to a new county and I never pursued services.  He started kindergarten the month after we moved, I was working full time, and I just never felt the need.

After we moved, I gave up trying to get services until
2013, when Nathan was 8-years-old

In 2013, Nathan started having some trouble in school.  I needed help.  But Nathan was now 8 years old, and his provisional eligibility had expired.  I contacted my local OPWDD (Office for People with Developmental Disabilities) office.  In New York, this is the first step to getting services.  I was told that the first thing I had to do was attend a Front Door information session.  These classes are 2-3 hours and are held at various locations around the state.  The sessions are a pre-requisite to authorizing services.  I took this class on November 26, 2013.

After I took the class, I was able to start the eligibility process.  During this process, OPWDD reviews various reports and records to determine if the person actually has a disability.  After taking the class, I sent in all the forms and reports in January 2014, but unfortunately, the forms were returned to me as "incomplete".  Some of the school reports were too old to be acceptable.

I was frustrated.  Once again, I put it on hold.  We were in the middle of buying a home and moving.  I was overwhelmed by everything I needed to do.

When we were told we didn't have all the
documentation required, I gave up until 2013

A year later, in February 2015, I decided I needed to get the process moving again.  I reached out to the local OPWDD office again.  Because I had already attended a Front Door session, I was told to send copies of Nathan's most recent annual physical, classroom observation report from the school psychologist, teacher evaluation, social history, developmental pediatrician report, reports from his speech and occupational therapists, psychological evaluation and IEP.  I sent everything the following day.  (If you have a child with special needs, you have all these documents close at hand, at all times.)

Does this look familiar?  This is my pile
of paperwork that I keep in the corner of
my dining room, in case I need anything!

The very next day, on February 26, 2015, I was told that the BASC (Behavioral Assessment System for Children) test our school district did on Nathan was not acceptable.  Nathan's IQ was determined to be 60, people with IQ's of 60 or above require either a Vineland or ABAS (Adaptive Behavior Assessment System) test.  I reached out to our school district immediately and was told they have the Vineland test.  I emailed the school requesting the test and providing consent to do the testing on the same day.  (None of this made any sense to me. I don't know what these tests are- or why some are acceptable and others aren't.  But again, I was frustrated!)

On March 9, the school had completed its portion of the Vineland test.  There is also a portion for parents to fill out, I completed that on March 11, and two days later on March 13, the school had evaluated the test and I sent the report to OPWDD.

In July 2015, we got Nathan's disability determination letter

On July 13, 2015, I received the letter we had been waiting for!  Nathan had been determined to have a disability.  We were assigned a Medicaid service coordinator, but first we had to go through a separate eligibility process for Medicaid services.  I told our service coordinator that we were having serious behavioral issues with Nathan and I didn't know how much longer I could wait.  Because of my concerns about Nathan's behaviors, on July 17, 2015, we were refereed to a crisis program.

On July 20, 2015, our Medicaid service coordinator came to our house to fill out more paperwork and on July 22, Nathan started seeing a crisis intervention therapist once a week.  She comes to our house to help us and Nathan deal with his meltdowns.  She has been seeing him ever since and has truly helped with is behavior.  

After I filled out the paperwork for Medicaid, I didn't hear anything until October 6, when our service coordinator requested a new disability report.  I sent it to our pediatrician and he returned it the same day.

In December of 2015, we were still being
asked for more documents

On December 7, they requested an updated psychological/social evaluation from the school psychologist.  She immediately did the eval and got the report back to me.

On March 10, 2016, my husband Jason and I had to fill out updated personal information about ourselves- address, phone numbers, employers, etc.

On April 4, I received a request for updated information from Jason and me, our school and our pediatrician.  I got the documents in the mail on a Monday and the accompanying letter said if they didn't receive it back (by certified mail) by that Friday, we would may need to start the entire process over.  I flipped out.  I called our school, they said they could get it done the next day (Tuesday). I called our pediatrician, but he was out of the office until Thursday.  There was no way I could return all the documents by Friday. I called, very upset.  I was told that they could extend the deadline, but that the person working on our file would be leaving on vacation for 4 weeks on Friday, so if he didn't get it to him before he left it would end up in a pile on his desk.  I decided to take a deep breath and just send it in when I had everything back.  I ended up sending everything on Friday April 8.

July 2016, Nathan is 11-years-old and FINALLY
got his Medicaid approval (he's grown so much!)

On June 27, 2016 (nearly a year after we got Nathan's disability determination and 14 months after we started the process) I got the next letter we had been waiting for- Nathan was approved for Medicaid.  I got his Medicaid card in the mail the following day.  I also got an email from the Medicaid service coordinator I had been working with.  She is leaving and we had been assigned a new one.  So far, I have used his Medicaid card at his psychologist and for his prescription medication.  I have not heard again from the new service coordinator to set up other services.

Throughout this process, I hit a lot of road blocks and was disheartened by the entire system.  I said to my husband several times, "I think they just want people to get frustrated and give up and I'm sure a lot do." (I did!)  I was also told by people along the way- at least your child is young and isn't aging out of school services.  I didn't find that reasoning very comforting.  I'm sure there are kids who have aged out of school and are waiting for services for more than a year.

If you've been thinking of getting Medicaid and/or a disability declaration for your child, do it.  It will probably take a long time, and it's definitely an upsetting process, but hopefully it will be worth it in the long run.