Blog #64~ When Your Child With Special Needs Hits Adult Age
What happens when a child with special needs hit the age of 18? While other parents are busy visiting college campuses and searching for extra-long sheets for the dorm bed, a parent with a child with special needs is going down a different path.
Nick’s legs are long and hairy like a man, but he still enjoys sitting like a kid. That along with watching Disney movies and Thomas the Tank Engine….. Welcome to Nick’s world 🙂
Our son, Nick has Down syndrome and autism. He is unable to take care of himself and live independently. When he turned 18 years old we had to file with the court to become his legal guardian. This process involves a trip to the courthouse to fill out paperwork, pays some fees, secure a court date and then appear in court before a judge with your child. We did not use an attorney but the advantage would be that you get in the queue faster. Each year you are required to submit an annual report, (available from the county courthouse website), 30 days before the yearly court date.
The next step was to apply for SSI (Supplemental Security Income.) Supplemental Security Income (or SSI) is a United States government program that provides stipends to low-income people who are either aged (65 or older), blind, or disabled. It is administered by the Social Security Administration and funded from the U.S. Treasury general funds, not the Social Security trust fund. The application process can be done online (www.socialsecurity.gov). Once this is processed, a phone interview is scheduled where the application is reviewed and verified. Determination of how much the stipend will be is based on the applicant’s income, residency/ living arrangement, and resources.
The next item of business in our state was this; when a child with special needs turns the age of 19 in the state of Illinois, it is required that you apply with the Department of Human Services (DHS) for the adult waiver which covers medical benefits and funding for respite care. Nick had been receiving state funding through a child based waiver under the umbrella of Medicare. The funds are used for medical benefits if needed and respite care which allows me to still teach my classes and go out and go out and have a life on occasion. It is essential to do this before the end of the month of the child’s 19th birthday. I found myself tangled up in some major *red tape not realizing this. Be sure and scroll back to Blog #44~Who’s in Control? ( scroll down the right side to the March 2013 archives) for the full story about that debacle! Spoiler alert in case you missed Blog #44 the first time….. oh my! 🙂
Managing a child over the age of 18 years old has become a part time job. Every month, all the receipts on Nick’s expenses have to be entered on a spreadsheet to manage his checking account. If the account gets above a specified amount, SSI will be denied. Each year the annual reports and accounting records have to be reviewed by the county judge and the Social Security Administration. The matters associated with becoming an adult special needs citizen is serious business. Staying on top of things is essential. Many school districts offer transition fairs and provide guest speakers who offer valuable information regarding how to navigate through the hoops of bureaucracy. My advice is to take advantage and learn all you can before your child hits adult age. Oh, one last note~ All 18-year-old males must register for the draft, that’s right even those with special needs. The image of Nick wearing a camo uniform holding a M-16, priceless. 🙂 That’s what is in my noggin this week.
~Teresa
*Red Tape is a derogatory term for bureaucratic methods, derived from the fastening for departmental bundles of documents in Britain.
According to Wikipedia:
“The origin of the term is somewhat obscure, but it is first noted in historical records in the 16th century when Henry VIII besieged Pope Clement VII with around eighty or so petitions for the annulment of his marriage to Catherine of Aragon. A photo of the petitions from Cardinal Wolsey and others, now stored in the Vatican archives, can be seen on page 160 of “Saints and Sinners, a history of The Popes”, by Eamon Duffy (published by Yale University Press in 1997). The documents can be viewed rolled and stacked in their original condition, each one sealed and bound with the obligatory red tape, as was the custom.
It appears likely that it was the Spanish administration of Charles V in the early 16th century, who started to use the red tape in an effort to modernize the administration that was running his vast empire. The red tape was used to bind the important administrative dossiers that had to be discussed by the Council of State, and separate them from the issues that were treated in an ordinary administrative way, which were bound by an ordinary rope.
All American Civil War veterans’ records were bound in red tape, and the difficulty in accessing them led to the modern American use of the term,[5] but there is evidence (as detailed above) that the term was in use in its modern sense sometime before this.”
Down Syndrome with a Slice of Autism 
