It never occurred to me that I would have to ask the Florida Family Court for the right to make decisions about my son’s future. There was no doubt, in my mind, that I had a God given right to decide how my son would live out the rest of his life. After all, I am MOM and he is autistic and incapable of making life long decisions. Wrong. My son’s mental disability, according to the State of Florida, does not change the fact that at the age of 18 he is an adult.
In order to make vital decisions concerning the adult life of an individual with disabilities, a surrogate decision-maker must be appointed by the court to make personal and/or financial decisions for that individual.[i] In other words, a parent must become the child’s legal guardian otherwise, the disabled child becomes a ward of the state (state’s dependent).
The truth of the matter is, whether you want to or not, you should start planning your child’s transition to adulthood while he/she is a junior in high school. Two years before graduation may seem excessive, but you will need the time to plan, gather pertinent information, learn your rights, review legal documents, and/or employ someone to help you with the process.
Starting this process early will ensure your child’s needs are met to your satisfaction and not to those of a complete stranger, like a state employee. Below six steps will help you get started:
1. Create a Personnel file (also known as a Care Notebook) – creating a file or notebook will help with organization. Include separate sections for medical records, school IEP (Individualized Education Plan) reports, provider’s contact information, behavior assessments and anything you deem pertinent to your child’s life. Remember to keep the current records in the front, reverse chronological order will keep you up-to-date. Here is a great tool to get you started – visit this site for step by step instructions http://www.medicalhomeinfo.org/for_families/care_notebook/
2. Clarify Requirements – determine what coordinated services your transition-age child will need; independent living, vocational/educational programs, housing assistance, adult daycare services, college, etc. Keep in mind that while all states offer adult programs for the disabled, most programs have a waiting list. Therefore, it will behoove you to be prepared and know, in advance, what your objectives are.
3. Legal & Professional Assistance – the transition to adulthood is as much a legal matter as a personal one. Seek professional assistance by speaking with experts who can guide you through legal options, such as guardianship or special need trusts. Build a professional support group that includes disability attorneys & legal aids to help you complete legal forms. If your child is not receiving such entitlements as Social Security and Medicaid, visit your local government office or go online to https://www.disability.gov/home/i_want_to/disability_benefits for more information about social security benefits and other programs.
4. Connect with your Support Coordinator – If your child is receiving state disability benefits, speak with the state support coordinator assigned to your child’s case. Ask for referrals to service agencies and non-profit organizations. Do not forget that you have an invaluable support group right at your child’s school. Ask the Special Education department for direction and assistance with adult services. Speak with your child’s teacher about your objectives and plans. Search online for organizations dedicated to helping families living with disabilities, such as The National Autism Society, CARD @ USF, and The Arc. Moreover, do not forget to visit the government’s career planning site. The site is a great resource for career planning, mentoring, apprenticeships, job training, and youth programs. https://www.disability.gov/employment/career_planning Remember to exhaust all your options before making a final decision.
5. Final list/Perfect Fit – once the groundwork is complete, tour, tour, tour. Call and visit the places on your list to determine if it is a good fit for your transition-age child. If adult vocational training is on your list, call the school and speak with the admissions counselor or schedule a tour. You want to ask about programs for disabled students, see those services in action, check out their setting, and meet the staff. A tour will help you make an informed decision.
6. Take Care of You – Meeting the needs of your transition-age child will have its challenges and you will face ongoing challenges throughout this process. Make time to take care of yourself and other family members. Perhaps therapy or counseling services will help you and your family deal with this ongoing burden. If therapy is not an option, do not underestimate the power of support groups, friends, and other parents in similar situations. Speaking with families in similar situations can be very therapeutic. The truth is, if you do not take care of yourself, you will not have the mental or physical energy to take care of others.
Next post; Part 2 – Higher Education/Vocational Training coming soon
[i] Guardianship; Florida State Courts http://www.flcourts.org/gen_public/family/self_help/guardianship/index.shtml