Developmentally Disabled / Handicapped Services at 18 in North Carolina

07 Mar

My developmentally disabled son turned 18 in January 2014!  What a wonderful milestone.  He joined the “system” of services in North Carolina at the age of 4 months when he started with an IFSP plan.  He went to “early” preschool because of his disability and then had an IEP.  He received speech, OT, and PT services in school as well as pull out and accommodations for his specific learning needs from K-12.  However as he got ready to turn 18, we were at a loss to what were the next steps! We were disappointed that our school provided little to no information about what we were to do “after” school and did not give us any resources.  I tried researching things on the internet but there was no one place where it was all spelled out for me.  Everything I found was for the elderly not for an 18 year old with DD.  So, as I walk down this path alone, trying to figure out what is available, I am blogging our experience in hopes that I can save some other parents the troubles that we went through to find out what is available.  I hope that perhaps other schools do a better job with helping families with these connections but we were only connected with Vocational Rehabilitation and they were not able to connect us with anyone else!

To begin… I would start this process at 17.5 at the latest so that things are in place for when your child turns 18.  Here is the to do list and my experience so far with each:

1.  Guardianship  – we chose to apply for guardianship since we felt that our son was not capable of making the right health decisions nor did we want to risk him entering into any contracts that he did not understand.  I wrote a separate blog on the steps to file for guardianship, so please read that for details.

2.  Jobs – for jobs, there are several ways to get connected with jobs possibilities and job coaches to help your child on the job.  Vocational Rehabilitation is one resource.  Overall, we have not been impressed with them.  They had told us to make sure the job coach was the “right fit” but when we mentioned that she didn’t seem to be the right fit, we were discouraged from discussing it any further.  They only want to place him in a long term permanent job so they can close his case and informed me that it might take months or years (or if ever was even mentioned) to find that job.  They told me that they would work on carving out a job with employers that fit his needs and yet the job coach appears to just have my son send cold emails to companies.  My son’s job coach is not versed in the areas that my son has talent and strengths making it much more difficult for her to find him a good fit.  When asked about other resources, we were told they were “lousy” and not bother attending.  We were also not given any of the many other options that I found on my own.  We are not optimistic about the possibilities of work through North Carolina VR.  Job coaches, I believe, can also be provided through some other services such as personal care assistance.

3.  SSI – We applied for SSI disability at age 18.  We were told incorrect information so applied right at his birthday although you are supposed to wait until the start of the next month after the child turns 18 (if you don’t want to count parental resources).  We never received SSI for him as a child since we made too much money but now that he is an adult, he is able to apply on his own.  The process required an interview at the SSI office.  You must bring lots of ID!!!  We had to send off lots of paperwork and give the names of all doctors/therapists, etc. he worked with to document his disability.  We asked for quick consideration under two quick consideration classifications (cerebral palsy and schizencephaly).  I do not know if we got approved quickly because of that or if he was just approved quickly in general.  Yet, he was approved within 1 month and received his first check right on time.  We were told by VR to expect to go to court and delays of a year or more yet it was a quick process as he clearly qualified.  He also got Medicaid automatically after being approved for SSI.

4.  Alliance Behavioral Health – we were calling day programs to get information and they suggested we call Alliance.  I called them and they appear to be THE provider for all other services.  I had to apply and get my son approved in the same way we had to get approved for VR and SSI.  It required faxing a lot of paperwork showing his medical issues and disabilities.  He was approved in a couple of weeks and then we were referred for other services.  In order to get these other services, you must go through this process first.  ABH also put him on the NC innovations waiver list.  This list has a 10 year wait (or more) but provides a high level of service (up to $135,000 per year per client) for all types of service including day services.

5.  Personal Care Services – Universal – ABH referred us to Universal for Personal Care Services.  Here he can get 5-12 hours per week with someone working on independent living skills in our home or in the community.  I was impressed with their contact person and so far, it looks like a great service that will be very valuable for him.

6.  Community Guide – Community Partnerships – ABH referred us to Community Partnerships for the community guide program.  This is a 3 month program where the person gets to know the individual and then connects you with ALL the related services in the community that are appropriate for you.  We have a meeting coming up so I cannot comment yet but our phone conversation was good.  She is going to tell me about other waivers other than NC Innovations that my son might qualify for, social possibilities, day programs, college programs geared for developmentally disabled, etc.

7.  Respite – We have been referred if we need respite.  Right now, my son can stay alone for short periods so respite isn’t a huge need but I am trying to find out if any overnight respite is offered.  It might be that I can pay for overnight respite car using his SSI to hire a private personal care assistant if we need to be gone overnight but I am still looking into those options.

8.  Day programs – I looked at one day program where adults did various “camp” classes such as art, yoga, science, music, etc.  We are not sure if it is a good fit for my son but hope to get more information from the community guide about programs that best fit his physical and intellectual strengths and challenges.  These programs are only “free’ if you have the waiver so it would be costly to do it on our own but we may need something for him to do after graduation at least part time.

I continue to learn more about what is offered and available in North Carolina.  One thing that would have been helpful would have been to get on the NC Innovations waitlist years ago but no one told us about it!  I hope this information provides others with some ideas of the resources available in NC.  If you have found others, please share in comments section.


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