A Checklist For Transitioning Parents - What I information I am passing on to other parents.

What? Me? A guest speaker? Will's teacher asked me to speak to other 'transitioning' parents this week at a school meeting, to offer my experiences and tips. As I told her, I hope I can live up to her expectations. This sent me looking through all the paperwork I have accumulated from transition seminars and workshops,

tips from school and information I just searched for, as well as looking over the applications I have already filed. So here is a list I would like to share to others who may be starting their 'adventure' down transition lane or to remind other families in the middle of it that the process can seem like it takes an eternity, can be confusing, can be frustrating (yes - you do have to deal with government agencies) but it is worth it.

Checklist: 1) file for Supplemental Security Income (SSI) - they can start receiving at age 18; 2) check in with the Office of Rehabilitative Services (ORS) which I did about 1 year before leaving and Department of Behavioral Healthcare, Developmental Disabiities & Hospitals (BHDDH) - I started doing this about 10 months before he turns 21; 3) apply for guardianship - this we did at age 18, and healthcare like Medicare or Medicaid - we are doing this now (probably a little later than we should have) with his caseworker; 4) check with your teachers about a vocational assessment being done; 5) get the Supports Intensity Scale (SIS) done - this we did in the late spring of this year. We did this early since someone told me it is a good idea to have his letter of funding with me when we went to visit agencies so they could see what help he is getting and how they can fit. After all these are done, you should be close to your child getting out of school at 21 years of age. Now you start looking at a variety of adult services whether they are day services or residential. Take your child with you so you can ask him/her, if they are verbal, what they like or do not like. If they are like Will, non-verbal, just watch for reactions like if they stop to look at things or seem extra interested in some activity or room; or do they just want to move on and get back to the car. Right now our state is redesigning their work programs so many agencies are not taking names. I was told by some agency directors that it is a good thing I am looking what is considered 'early' at programs because I still have a shot at getting in before more places stop accepting people or can get Will's name in so he can hopefully start fairly quickly after leaving school - there may not be a long span of time staying home and getting 'real comfy'.
We are seeing the light at the end of the tunnel, Will's name is in 2 agencies with people looking over his 'application' - hopefully he will split his time, one for work & one for community time. Besides talking to your child's teachers, go to any and all informational seminars and workshops. They do provide a wealth of information - both written (tons of brochures and booklets) and verbal (lots of agency representitives and don't forget the other parents). Some of these agencies can help you manage your way through all of this as well. I have several other posts regarding our experiences on my other blog so please feel free to check it out: A Lifetime of Special Needs