Congratulations! You now have an adult on your hands. However, this adult still needs our assistance as they transition into independent living.
If they had applied for Social Security Disability Insurance (SSDI) Medicaid will come with the SSI approval. Once again, carefully review and consult with your state’s individual regulations. By now, all matters related to Guardianship and a Special Needs Trust or an ABLE account (New Jersey residents) must be completed. Registration with the Division of Developmental Disabilities (DDD) must be confirmed. If necessary, complete a new one.
Depending upon your child's level of disability it is crucial you be prepared to fill out and apply for as much as you can for when by state laws they are considered an adult. Get ready for an "Apply-A-Thon." Apply for your state's non-drivers ID card from the Division of Motor Vehicles. Find out about your state's Personal Preference Program which is budgeted through your Medicaid HMO. Apply for the Community Care Program's waitlist for housing. Once you're done applying, you can start registering. Register to vote! Register for Selective Service! We still have life skills to review but let's check in with the family first.
The Family's Role at this point in time
Learn, Learn, and Learn, this cannot be stressed more than ever. As parents or caregivers you will find and attend workshops, online seminars, whatever you can do. These workshops and meetings are meant to be a safe space for families of individuals with disabilities, to openly discuss about their goals, parental experiences, challenges, frustrations, and learn how to build upon the transition plan.
Your little boy or girl may be an adult now, but as a special needs parent, you know your involvement is far from over. You should discuss representative payee & Guardianship. Your teen will require assistance with living options. He or she is probably still in the middle of deciding between vocational training and post-secondary education.
For your continued peace of mind, inform the local fire department of necessary accommodations for emergency preparedness. Determine Guardianship, Medical Durable Power of Attorney, or conservatorship. This is the time to facilitate opportunities for your child to make his or her own choices and decisions. However, in addition to your continued support, continue to maintain any relationship they may have with an adult mentor or role model with a similar disability. If they do not currently have one, it is never too late to find one.
The School's Role–This can vary depending upon circumstances
Now, we begin to grow wistful. Our role begins to diminish. Students will continue to attend IEP meetings and be expected to self-advocate right up to the end. All IEP requests should be in writing to the school district and special education department. Transition goals should be individualized to the student's interest. Then, it's time to graduate unless they are in a program covering their education till the age of 21. He or she may walk with the local high school class whether graduating or utilizing school transition services.
Career Exploration Continues
Job exploration and job training continue. Hopefully, a summer job enters the picture. Resumes or video resumes should be completed. Look for opportunities to connect with career interests. Continue the exploration of job fairs, or career counseling either through their IEP transition plan, or outside services such as DVRS.
HealthCare Planning Never Stops
This is the time to switch to “adult” medical providers within their respective healthcare networks. It is important to be aware that pediatricians will not continue with medical services once the student reaches the age of 18. If on Medicaid, obtain Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services, through age 20. From here, it becomes a matter of which tasks your son or daughter can take care of themselves. Applying for adult SSI may be necessary to remain on Medicaid. They should continue to update that list of contacts. Hopefully, they understand their medical background and needs. Their Letter of Medical Necessity can be updated with their current abilities and needs. Maintaining a portable medical summary is still a good idea.
Life Skills are even more crucial now
Planning living arrangements is a full reality now. Carrying a cell phone is almost always applicable. If your son or daughter wishes to travel, they can obtain a passport. Self-advocacy remains essential, not just in meetings and appoints, but in interactions with providers, therapists, and teachers. An "elevator speech" about his or her diagnosis is a great idea. This can be practiced or prepared in advance and saves some time and effort.
While in some cases and states, a special needs child at the age of 18 is still considered within the Child System of Care. Unless the student has signed legal forms of consent, a parent cannot sign on their behalf in the eyes of the state. This is why Guardianship and Power of Attorney documents are necessary to have been planned accordingly earlier on as we noted in our “Transition Series Articles”.
While that may be the case, the above goals and needs still are necessary to forge ahead with because the age of 21 can sneak up on us quicker than we realize.