Updated: Jul 4
Two common predicaments at 18-22 and how to solve them
According to many parents, when our self-advocates reach the ages of 18-22 it feels like they are falling off a cliff. Two events occur that we are often unprepared for:
They reach 18 so they are eligible for their own guardianship and benefits
They finish high school and often come home to full days with little to do
Why is the age of 18 so important? For all our kids, in the eyes of the law they become "independent adults." They can legally make their own decisions. They can make their own financial and medical decisions. They can move out on their own. They choose their own relationships. They are ultimately responsible and...you are NOT! It can feel scary but a bit liberating for parents but especially for those with loved ones with developmental delays, it can sound impossible. But the law applies to them as much as to you. There are two important items to focus on:
Guardianship: unless you take steps to secure guardianship, your loved one with Down syndrome, like all our kids, will become legally independent at 18. Not only can they make their own decisions, you are not legally able to make decisions for them or even be in the school office or hospital room with them unless they invite you. And if the school administrator or lawyer or doctor doesn't feel your loved one is prepared to make the necessary decisions, they will bring in the state to assist, not you. You have no legal standing anymore. I recognize guardianship can be controversial. We want our loved ones to have authority and responsibility, but the two are not mutually exclusive - you can certainly continue to involve your son or daughter in all the discussions and decisions that affect their lives while securing legal guardianship. Guardianship allows you to be in the room, to help make decisions, and to provide the guidance our loved ones may need. Honestly, we seek to make critical decisions as a group for all our family members, so why not secure that right for our loved ones with Down syndrome who may not always recognize the value of such collaboration? Guardianship does take some time and money to secure through the courts and requires modest annual renewal fees and reporting. You should start working on this with a lawyer well versed in guardianship for the disabled while they are 17 in order to minimize any gap in coverage.
Benefits: at 18, regardless of guardianship status, your loved one becomes eligible for certain benefits based on their own medical and financial qualifications. More information is available in The Essential Guide.
SSI: Typically, people with Down syndrome are seldom scrutinized when applying for Supplemental Security Income (SSI) at 18 (or earlier based on extreme need-based circumstances). It is important to apply for these state-managed benefits as soon as they turn 18. SSI will typically provide regular monthly income ($914 in 2023) to the individual. This amount can be reduced based on their work income and housing situation. An ABLE account will help protect their eligibility (by parking income in your ABLE account) and can help maximize their award (by utilizing an ABLE account for you to fund a rent amount and them to "pay" you that same rent amount from their ABLE account).
Medicaid: With SSI eligibility, your loved one becomes eligible for Medicaid. This is typically medical and dental coverage at no monthly premium with little to no co-pay for appointments or prescription drugs.
SNAP: Typically your son or daughter will be eligible for SNAP (what many of us know as "Food Stamps") when they are Medicaid-eligible. SNAP will assess needs and income level of your loved one and usually provide monthly benefits that range from less than $100 to several hundred on a card that any family member can use at the grocery checkout.
HIPP: If one of the parents is on a company-sponsored medical plan which includes your self-advocate and they are on Medicaid, the HIPP program will reimburse some or even all of the monthly family premium that you pay for family medical insurance. This can be several hundred dollars per month!
The Essential Guide for Families with Down Syndrome: Plans and Actions for Independence at Every Stage of Life by Steve Friedman has a wealth of information for families that include a child with Down syndrome. The author shares his family’s journey nurturing their daughter, Gwendolyn, who has Down syndrome, and paving the way for Gwendolyn to reach her goal of independence. The book is thoroughly researched and yet is very readable. The many checklists and templates give readers concrete guidance for doing age-appropriate activities throughout the process of raising their children with Down syndrome. The valuable advice can truly benefit parents not only of children with Down syndrome but parents who, in tune with their children’s needs, enable them to thrive.-Judith (Amazon Reviewer)
High school has just finished. Celebration is in order! Your loved one with Down syndrome has learned life skills, been exposed to academics, developed relationships, and has likely built a level of confidence and initiative. But tomorrow they will come home and soon it becomes obvious the burden has shifted back to the parents for the first time since about age 5. What are your next steps?
Continuing Education: many studies have shown that if we stop learning, we will plateau and regress. We will start to lose the academic, social, and life skills we worked so hard to develop. That is certainly true for people with Down syndrome. Sitting on the couch, playing video games all day, or going on the occasional errand will not maintain their learning trajectory. They don't necessarily have to be in a regimented 9-3 program, but structure and exposure to new things are critical. Here are 3 ways to tackle this challenge:
Day Programs: there is a wide variety of day programs around. Some are basically adult babysitting, others hard workshops, but some provide a quality balance of life skills, academics, and vocational skills in a very social environment. Some are publicly funded (from Medicaid Waiver Programs which you are eligible for but may need to be on a waiting list so apply when they are toddlers!) and others are private pay. Evaluate your options. Get references from other Down Syndrome Association families. Check out our checklist of options and evaluation criteria in The Essential Guide. Poor programs will stunt their growth while quality programs will catapult your adult's learning to another level. Be diligent in your evaluation.
Inclusive College Programs: there are many inclusive programs around the country. Some are through local junior colleges and others are through traditional 4-year universities. The best offer a structured track, a variety of classes, on-campus inclusive housing, and a buddy program for ongoing support, with certification and job placement assistance upon completion. Clemson University's ClemsonLIFE program is considered one of the best. Dr. Joe Ryan describes his program in The Essential Guide and you can learn more about all programs online.
"Homeschooling": some parents opt for the homeschooling option. While this may not be as structured as primary/secondary homeschooling, it will be incumbent upon the parent to develop a program that builds life, vocational, and social skills both in the home and on field trips. This requires a lot of planning and time on the parent's behalf, but many find it a rewarding and bonding opportunity.
Work: this option can go in tandem with any of the continuing ed options. Work is more about the skills, relationships, and pride your loved one builds than about the income. Government resources may help you find the right job but if that fails, and it might, be prepared to create a resume, talk with friends, and knock on local business doors until you find the right fit. You will likely know the right fit when you see it. Seek someone who can communicate with your loved one and who can find the right balance of challenge and support. Remember, you are not offering a charity but a hardworking, energetic, team player. Do keep in mind that work income can reduce SSI benefits and too much income (or assets like bank accounts) could potentially make your loved one ineligible for SSI (and thus Medicaid and the other benefits listed above) so be aware of the rules and manage income levels closely.
There is a lot to consider as 18 approaches. And if your son or daughter has already passed 18, it is never too late to reconsider guardianship, apply for benefits, and develop a program to keep them learning and growing.
Beyond Down Syndrome and The Essential Guide are here to help remove the mystery and empower you to navigate your own roadmap to independence.
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The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“Great resource. A comprehensive planning tool paired with thoughtful parent perspectives.” Teresa Unnerstall, Consultant and Author of A New Course
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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