By Sidekicks Chief Operating Officer Jamie Douglas
When Niko asked that I write something to help families who have children transitioning into adult services, my initial thought was to offer first some simple advice. Hold on, it’s going to be a bumpy ride. For many families, a great deal of time and energy was necessary to secure appropriate services for their children when they were entering into the educational system at the age of five or even younger. Years of seeking medical assistance, working, and sometimes fighting, with school districts, securing extended day or extended school year services was a hard and tiresome task for families who only wanted the best for the special needs child. For many families the hard work paid off and appropriate educational services were secured and most importantly funded by the department of education during these most important educational years.
As most parents will tell you, “In a blink of an eye” children are suddenly young adults standing on the threshold of adulthood. For many years we are consumed with thoughts of our children being accepted into a good college, hoping we as parents have done our best to teach them right from wrong, to be kind, responsible and successful in their chosen endeavors.
This however is a very different reality for our families who need to plan for their special needs child as they approach adulthood. The realization that they are starting all over again is daunting. Gone are all of the entitlements that come with the educational years. Extended day program – gone. Extended school year – gone. Speech therapy, occupational therapy, physical therapy, consultants and most importantly, transportation – all gone. Our families find themselves heading a top speed towards a cliff with seemingly little guidance on how to keep from going over the edge.
As a human service professional I spent over 35 years working with families and nothing was more rewarding as the 20 years I spent working with adults with disabilities. One of the biggest challenges was guiding families through the maze of state agencies and processes to secure the best future for their child. Currently the State of New Jersey is transitioning into a fee for services system which only makes things even more confusing. Here are some ideas and tips that I hope assist you in navigating your child’s transition into adulthood.
1. It’s never too early to start the process. By the time your son or daughter is 14, start talking with your school and child study team about the transition to adult services. Put together a transition team and begin discussing the following:
- a. The students strengths and preferences
- b. Potential future life path (work, college, trade school)
2. By the age of 16, with the students input, the IEP should state the need for a transition plan including community experience and educational requirements necessary to achieve his or her goals.
3. Before the age of 17, families should:
- a. Begin the guardianship process for their child if necessary.
- b. Begin the vocational rehabilitation process (this should occur at least 2 years prior to graduation.
4. Prior to the age of 18:
- a. Social Security benefits, Social Security Disability Insurance and Medicaid benefits should be established.
- b. Contact your Regional Division of Developmental Disabilities office and apply for DDD services. This includes the New Jersey Comprehensive Assessment Tool
5. At the age of 18
- a. The student has the right to register to vote
- b. The transition team should begin discussing and visiting adult agencies to assess service and support options
- c. Families should begin to explore and select a support coordination agency (parents must choose a support coordination agency that can best assist them in securing services for their child. If families do not choose an agency, one will be assigned by the state when your child turns 21)
- d. Residential options should also be investigated if desired
Note – At 18 your child move from a system of entitlements to one on eligibility. Specialized educational services may continue until the age of 21 in many cases
6. At the age of 21:
- a. Your child is no longer entitled to services and is moved into the Medicaid based Supports Program.
- b. The individual and their family must access services through their established budget.
When reviewing the time line above it is easy to see why the earlier you start the better you are able to plan along with your child for their future and make it a successful one. It a lot of work but with the new fee for services system families have more options including: career planning, employment, community supports, specialized equipment as well as other supportive services. My best advice is to become as informed as possible and know your options. Talk with other families who are currently or have recently experienced the transition options. Become very familiar with the State websites and use their help desks to answer your questions. The Division of Developmental Disabilities has been very good at conducting webinars for families and agencies which are all available on YouTube. Individuals with disabilities are one of the largest growing populations in the State of New Jersey. There is a lot of power that goes with it. Use it to your advantage to gain the services your family member needs as an adult. Here are some websites to get you started on your journey to adulthood and hopefully make it a little less bumpy.
Autism Speaks Transition Tool Kit
Application to DDD Services
New Jersey Comprehensive Assessment Tool
Applying to Medicaid
Division of Vocational Rehabilitation Services (DVRS)
Applying to Social Security
Applying to Social Security Disability Insurance
Choosing a Supports Coordination Agency