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Your child is legally an adult, but if you have legal guardianship, you will continue to make decisions for their care and education going forward.
Your child may remain in school through the ages of 21/22. As a member of the school community, your family enjoys a wealth of expertise and resources, as well as a predictable routine, but soon you will be on your own. Leaving the school environment can feel like “falling off a cliff” as one parent of a special needs adult said. Now it is time for you to start planning and implementing for their life outside of school as they transition into the adult system of care.
The Family’s Role (from healthcare, employment, day services and housing)
At age 18, your child became eligible to apply for Social Security Disability Insurance (SSDI) or Medicaid. If you haven’t yet done that, it’s not too late. If your child is receiving government benefits, be sure that any money you bequeath in your will is paid through a Special Needs Trust. Setting up an ABLE account should be a serious option to consider too. An ABLE account can be completed and set up along with a special needs trust, or as a standalone account. Even a small amount of inherited money could disqualify them from SSDI and Medicaid. As always, carefully review your state’s individual regulations and consult a lawyer who specializes in special needs support and laws if necessary.
As difficult it may be in some circumstances, it is never too soon to start thinking about and researching your adult child’s housing options. Will your child live with you or in a group home? Group homes are options for people who don’t require more advanced care but who cannot live independently. Researching and touring possible placements takes longer than you think, so start early. Waiting lists for programs can be very long.
You will also start thinking about day services. Will your child want regular employment, or a day program, or a combination of part-time employment and daytime activities? You will also need to think about transportation to and from your child’s daily activities.
Government Services
The Division of Developmental Disabilities (DDD) can help with these questions. First, you must complete the NJ CAT. This is the mandatory assessment used to determine an individual’s eligibility to receive Division-funded services. Take care of this in the fall of your child’s last year of school to ensure the budget will be in place before graduation. Keep in mind that once an individual turns 21, their DDD budgets can be assessed even if they are still in a school.
Results of the NJ CAT will determine the budget for particular services for your child. The DDD will send you a tier assignment letter. Once the DDD notifies you of your child’s tier level, complete the Support Coordinator Selection form right away. If you don’t choose, you will be auto-assigned a support coordinator. It’s a good idea to put two choices, so you are more likely to get the coordinator of your choice. It is strongly recommended that you research each one carefully. Develop a set of questions specific to your adult child’s needs, challenges, and goals. Use this set of questions as a comparison so you can fairly gauge which top 2 are your best options.
Once a support coordinator agency has been assigned, a support coordinator from that agency will contact you and will work with you to develop the Individualized Service Plan (ISP), which authorizes services and providers. Your ISP may approve a combination of individual employment, small group employment, volunteering, day habilitation, or other services during the week.
Employment Options
According to the DDD website, New Jersey is an employment First state, which means that employment is the preferred outcome for adults with special needs. Schedule an evaluation with the Division of Vocational Rehabilitation Services (DVRS). If your child is eligible, you will have many options to explore and decisions to make. First, counselors will assist you in the vocational assessment process to develop an Individualized Plan for Employment (IPE). The services included in your plan will depend on the job goal and special needs. For some, the services may include job training or coaching. Others may need special devices such as a hearing aid or modifications to a vehicle.
Your Child’s Rights
The school’s role will soon be over, but once your child graduates, he or she will continue to have legal rights for certain accommodations under the Rehabilitation Act and the Americans with Disabilities Act of 1990 (ADA). Apply for NJ Transit’s Access Link as a possible transportation resource. Access Link was established as an accommodation for people with disabilities who are unable to use the local bus service. Schedule a test ride with your child to gauge their comfort level with public transportation.
The School’s Role -- One Last Thing
During the last year of school, request an evaluation by the child study team. Your child will need this to provide documentation of his/her disability and the need for accommodations. This might be a letter or report from the child study team stating the diagnosis and effects of the impairment as well as recommendations for reasonable accommodations.
While the transition articles series strives to cover a range of essential milestone markers that parents need to be concerned with as their child progresses through the various age groups, their own individual challenges may dictate what are the best options and resources that have proven best over time. Please be sure to thoroughly discuss “all” of the recommendations outlined here with your support team.
Harbor School a private special education school in Monmouth County, New Jersey
Our mission at Harbor School is to help all of our special needs students with learning, social, language, behavioral, and other disabilities. Our highly skilled staff are committed daily to helping each student reach their full potential.
We would be more than happy to discuss your child's specific needs and challenges, so please call us at 732.544.9394, or request a tour at Harbor School in Eatontown, NJ. We are located just minutes off of the Garden State Parkway at exit 105 and conveniently located off of Route 35 and Route 36 in Monmouth County, NJ.
Erik Glazner,
Principal-Harbor School, Eatontown, NJ