Caring for those in Need

Life Transitions

We all experience transitions from one stage of life to another – graduating high school, moving on to college and work, getting our own place, marriage, etc.

BY Jordan Jankus | October 2023 | Category: Employment & Transition

Life Transitions

For people with disabilities and their families, transitions may require more planning and preparation and in fact, become a way of life. For “exceptional parents,” we transition from a more traditional growth track for our children as soon as the child is diagnosed with a disability, whether at birth or further along in their developmental stages.

Once we realize that our child will need additional services, we experience another life transition as we advocate to get them enrolled in early intervention services. Later, when they enter the local school system, we transition with them to a system that can be challenging in its complexities. As involved parents, we advocate that they be included in the social life of the school, that they receive the necessary services to help them along their life journey: academic assistance, therapeutic services (speech, physical, occupational, behavioral, adaptive sports, etc.) and access to assistive technology. Most importantly, our parent advocacy must be directed at helping prepare our children for a full life as an adult.

If you go back to the 1960s, the future for many people with disabilities involved moving into large institutional settings of group care. Inspired by the civil rights movement, many people with disabilities and their allies advocated for their right to a self-determined life in a community setting. Not everyone is the same and this uniqueness must be recognized. In the past, the individua had to adapt to the institutional system’s structure. Now self-advocates have insisted on a person-centered approach. While this is a noble goal, it’s not one that’s easily achieved without intensive advocacy from the individual and their family.

Planning for the adult world should begin as early as possible, even though your child’s date for moving on from high school may seem to be in the distant future. The worst time to ask for help in improving reading or social skills is six months before the person starts school. Start earlier! It’s your and your child’s rights!

Educate yourself and your child. Know your rights in the educational and adult care system. You and your child must become your own lifetime advocates! Self-advocates and their families must be involved in every decision! There’s a great phrase in the world of self-advocacy – “Nothing About Us, Without Us!”

Your child with disabilities should be part of all planning meetings, whenever possible, even if it is difficult for them to actively participate. It is important that members of Special Needs Committees (also known in many schools as the Committee on Special Education (“CSE”)) see your child as an individual, as a person, and not just some impersonal name and diagnosis on an IEP form. It is much more difficult for a committee to limit services if they must explain themselves to the person needing the services, along with their family.

See yourself and your child as partners in the system of supports, whether in the K-12 educational system, or the adult system of supports. Be actively involved with teachers, therapists, school committees, case managers, etc. It’s a lot of work, but you already know that, being “Exceptional Parents.”

The adult system of supports – housing, employment counseling, transportation, academics, social networks – is not as robust as the K-12 educational system, so it is important for the family to advocate for their child, but also to teach their children strong self-advocacy skills. For example, in the K-12 settings, some students have a paraprofessional aide. That is a rare occurrence in adult systems, so planning must begin early to explore alternatives.

All of us continue our learning adventure. No one stops learning just because their educational experience ends at twenty-one or some other arbitrary date. Make sure that everyone understands that it is impossible to measure a person’s life potential. No one is static!

People with cognitive disabilities need concrete experiences to help them make choices and learn new skills. Important life skills are best learned by doing, and not just by viewing a video or simplified text. Your child needs to learn how to use the bus system? Have someone take your child on a bus ride. Help your child understand how to get off at the right stop and learn to ask the driver for assistance, if needed.

If the student uses some type of assistive technology, make sure the tech is available to your child after they leave high school, and that adult support staff are familiar with its use, and are trained to help the person successfully use the technology. On several occasions, I have seen a communication device locked in a cabinet, unavailable to the person, because the adult care staff received no training in the use of the device. 

Think back to when you were young and starting in the work world. What was you first job? Is that the job that you have today? Probably not. Why should we expect people with disabilities to decide on a vocation, when they have no practical life or work experience? Much of success in a job is due to good social skills. No matter what the job, if you are late or frequently absent, or can’t follow directions, success is improbable. Vocational supports for people with disabilities are available and you should enroll your child, as early as possible, and demand help with job-related skills, but also sophisticated social skill training.

If your adult child isn’t ready for a job after high school, there are many providers of adult day programs that can help a person develop their life and vocational skills. Just make sure that you and your child visit the programs and ask for a trial experience. You want a program that is stimulating and helps your child discover and develop new skills and not just act as adult babysitters.

Most of the adult care system is funded through Social Security and Medicaid. Your child will need to be enrolled in these funding streams, if they are going to access most adult support services. Your special needs department can provide help on starting the application process. 

While it is a subject that we’d rather not think about, we will not be around forever to care for an adult son or daughter with disabilities. Years ago, people with disabilities didn’t have long lives, but now with improvements in medical treatments and other innovative care practices, they are likely to have more typical lifetimes. It helps to start thinking about future planning early, since many state support systems have long waits for residential supports, whether that be shared living, independent apartments, or group residences. My wife and I had to go through this tough decision process six years ago, when it was clear that as we approached our seventies, caring for Jessica’s physical needs would be more difficult. We found an accessible group residence for her, and she seems happy there. Through the miracle of FaceTime and regular monthly visits home with us, everything has worked out better than we expected.

If you feel your adult child has the capability to manage their personal affairs, then there are person-centered services such as shared decision making, that can help them manage their finances and major life decisions. If the individual has challenges in managing their affairs, you may consider having a guardian appointed to help them. Just because you are their parent, that doesn’t make you their legal guardian after they turn eighteen. Explore this with your high school’s special needs department. Due to the asset limitations established by Social Security and Medicare, the person with a disability is limited to the amount of assets that they can hold. If you plan to leave funds for your adult child, you need to consult with a special needs attorney to ensure that their benefits will be protected by a Special Needs Trust or other legal protections, so those funds won’t be included in the person’s asset base.

When you raise a child with disabilities, you have a lifetime of commitment and advocacy ahead of you. Appreciate what you do for them by being kind and generous to yourself. Tap into your support network of family and friends. It’s a journey that others have traveled before you. Learn from them and pass your knowledge on to the next generation of “Exceptional Parents.”  


Jordan Jankus is the proud father of Jessica, his adult daughter who was born with multiple developmental delays. In addition to his role as a parent, Jordan has worked in human support services for twenty-three years as a case manager, employment specialist, self-advocacy trainer and assistive technology specialist. From his life experience, Jordan provides his thoughts on the critical subject of Transition. You can read more of Jordan Jankus’ writings on the world of disabilities, parenting, lifelong learning, and technology at his Substack blog, “Plastic Learning” 

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