In our case we are lucky -- I guess you would call it lucky -- to live in a state that waives parental income for children and adults with extensive needs -- which qualifies them for a special type of extensive medicaid irregardless of their receipt of SSI benefits.
I say that you would call it lucky because this type of waiver requires 24/7 line of sight supervision. I don't think any of us have slept a full 3 hours in a row since Harley was born...so it is truly "lucky"?
Things you don't think about:
- *Officially they will be an adult so you will either need to get guardianship or a power of attorney if they can't handle their own medical and/or financial affairs. It DOES NOT MATTER that they are your child and you have been doing this all their lives...as of age 18, they are and ADULT with all the same rights as a non-disabled adult.
- *You have to file for their SSI or SSDI...or both. This process should start 6-8 weeks prior to their 18th birthday. I called to start his claim in March - 2 months before his 18th birthday - and the earliest available appointment was May 4th...which will be far too late for them to have a decision by the middle of May, so he may end up losing out on benefits. My other option is to take him to the SS Office and make the application in person and cancel the appointment in May -- which is what I plan to do.
- *If you intend to have your child attend school district programs (known as transition programs) beyond age 18 or their senior year -- well that will be a whole different post to explain that process -- but you have to make sure they DO NOT receive a diploma at graduation, even if they attend the graduation ceremony for social reasons. It is a FEDERAL LAW that the child receive services through the school district through age 21, unless you allow them to accept the diploma or otherwise request that they NOT attend services. (more on that another time).
- *If you intend to have your adult child attend adult day programs (over the summer or after the school required services) you MUST apply at age 18 for these services. Many times there is a waiting list.
- *Even if your child is currently on medicaid, you MUST reapply for medicaid under his/her own right as an adult. Here in Colorado it's considered "Long Term Care" Medicaid. This should be done prior to the 18th birthday so there is no lapse in coverage(s).
- *If you are seeing pediatric dentists, doctors, specialists, therapists -- this will all change!! Your pediatric specialist can refer you to an adult PCP who has knowledge in your child's disability...but be aware that supports and services for adults look completely different so brace yourself to take more of the brunt of providing services yourself.
- *If you have not yet made a special needs trust - MAKE SURE YOU DO! This is VERY important to protect your child's assets (if any) and inheritance (if any) -- especially if they will receive services and/or SSI as an adult.
- *Make your wishes for your adult child's future CLEAR in your Will. If you don't have a will, you better get on it!
- *If you do not have family that is willing or able to take on your adult child in the case of an emergency need (accidents happen as we know all too well, people get sick, you can die unexpectedly) and you do NOT have that in writing, well you better get on that too...You also need to contact your Community Centered Board (CCB) in your county if your child will need supported living services. There is many times a waiting list for residential services and if you have no people who can take your adult child in in the case of an emergency placement you will need to ensure they are up high on the waiting list (most states have LONG waiting lists --- Harley was placed on the adult residential placement waiting list at age 14 -- and is still on the waiting list!)...Make sure they are categorized high level so that if something unexpected happens they are moved to the top of that waiting list for emergency placement.
There are so many things to do -- this list is just a short paragraph of each item that will need to be addressed -- and doesn't include ALL things that need to be addressed prior to your child turning 18...and each one takes an extraordinary amount of time (and patience)...
So if you have been wondering where I've been? This is what my life has been revolving around since early February.
Overwhelmed yet? I am at times!
Stay tuned for more updates. For now I must return to the paperwork listed above...