Advice for Parents of Soon-To-Be Adults
Turning 18 is a huge milestone for anyone. When a young person with disabilities becomes an adult, their parents can have legitimate concerns about how to continue helping with decision making while also encouraging independence. Among parents and professionals, a common theme is to start early with preparing youth for adulthood.
Marla Brotherton and her family moved to Kingman from Illinois. They had previously set up guardianship and reestablished it in Arizona. Her son Ross, now 37, attends a day program through ARC of Mohave County. She encourages families to talk openly about future plans, starting long before their child turns 18.
“The young person should be part of the conversations about the plan,” she said. “These can be hard conversations to have, but you have to ask yourself what your young adult will do when their parents aren’t there.”
Guardianship is just one of the options families can choose to support their child at age 18 and beyond. Many families find that less restrictive options will meet their child’s needs while preserving their child’s right to self-determination. Raising Special Kids offers a free online workshop, Turning 18: Legal Options to help parents understand the available options. Parents can sign up on our website at https://raisingspecialkids.org/events.
Individuals assigned male at birth are required to register for the Selective Service System regardless of disability status. Visit https://www.sss.gov/register/who-needs-to-register/ for more information.
Many parents receive an unpleasant surprise after their child’s 18th birthday – suddenly they no longer have access to their child’s medical records. Establishing medical power of attorney or signing consent forms at the doctor’s office can maintain access.
Benefits provided to disabled individuals through Arizona Long Term Care System change at age 21. Parents or young adults are advised to check with their support coordinators for more information. Individuals who receive services from the Elderly and Physically Disabled division of ALTCS can talk with their health plan case managers.
Children who receive Supplemental Security Income through Social Security will go through an Age 18 Redetermination process. Qualification will be based on an individual’s ability to work instead of how their disability affects their everyday life. The SSI program provides monthly payments to adults with disabilities or blindness who have income and resources below specific financial limits. Previous jobs and employability may also be considered.
Once an individual turns 18, their parents’ income and resources no longer affect their financial eligibility. Social Security’s Youth Toolkit 2022 – Turning 18, available at https://www.ssa.gov/pubs/EN-64-122.pdf, provides more information about the age 18 redetermination process.
Young adults who are found no longer medically eligible to receive SSI payments might be able to continue receiving payments if they participate in special education, Vocational Rehabilitation or similar services until those programs end, said John Burns, public affairs specialist with the Social Security Administration.
For first-time adult SSI applicants, only their income will be considered, along with their ability to work or their work history. By qualifying for SSI, the individual might also be eligible for job training services such as Ticket to Work (https://des.az.gov/services/employment/rehabilitation-services/social-security-ticket-work-program), a voluntary work incentive program.
Applicants who are comfortable navigating the Social Security website can apply online at https://www.ssa.gov/, or they can start the process by calling 800-772-1213. The Social Security Administration lists eligible diagnoses online for adults and children at https://www.ssa.gov/disability/professionals/bluebook/index.htm.
Individuals who are denied SSI can appeal within 60 days. They could also reapply later if new information could help them qualify, Burns- added, such as difficulty in finding or holding jobs or a new diagnosis.
Many individuals turn 18 during their high school tenure, especially if they take extra time to complete their education or participate in district transition programs. Parents might be surprised to learn that once their child turns 18, they aren’t automatically invited to meetings for their student’s Individualized Education Program. A student with a disability may execute a delegation of rights for the purpose of educational decision-making. Forms are available from the school and will need to be signed by the student, notarized and returned to the school.
“The parent has been there since day one and it’s in the student’s best interest to give their parents the right to continue in those meetings until they graduate,” said Tona TreeTop, a student support specialist for the Gila River Indian Community Tribal Education Department. Tona is also the parent of Mateo, a 26-year-old with a traumatic brain injury. He graduated with an associate’s degree from Scottsdale Community College in 2022 and recently started a graphic design position.
TreeTop recommends that parents request a school transition plan as early as age 14 to start planning for life after high school. Legally, schools must begin planning for transition by the time a student is age 16, but it can be requested earlier. Students might participate in different variations such as school-to-work transition programs where they walk with their graduating class, and the school withholds credits so the student can continue with guidance from the IEP team. In this type of program, a student might visit job sites in the morning and learn about job search and independent living skills in the afternoon.
Students can also apply for VR services which provide job search and training skills. The goal is preparing for and retaining employment. VR applicants need to provide proof of a disability that causes challenges in finding or sustaining employment. School-to-work transition programs frequently collaborate with VR to help provide job skills training.
Adults who apply for services like VR will need an identification card; if they don’t have a driver’s license, they can obtain a state identification card through the Arizona Department of Transportation at https://azdot.gov/motor-vehicles/driver-services/driver-license-information/identification-id-card.
It’s helpful for parents to look into employment and transition services that can continue after high school, such as VR and other work programs. Parents can ask their school’s transition specialist or IEP coordinator for more information.
DDD AND EMPLOYMENT SERVICES
The Division of Developmental Disabilities provides services to individuals with developmental delays and disabilities. DDD redetermination for eligibility takes place for individuals who are about to turn 18. Many parents panic about their children losing benefits immediately upon their 18th birthday and about the redetermination process.
Traditionally, a DDD member’s support coordinator or the eligibility division will contact the individual when they are close to turning 18 to discuss redetermination including whether updated documents from school or physicians are needed.
Parents need to know that their child’s DDD benefits will continue throughout the redetermination process, said Sophia Lehrich, DDD eligibility manager. While it’s helpful to provide new IEPs, school reports and any updated medical information, new diagnoses are not always required for redetermination. If a new diagnosis is requested and the family needs to wait for an appointment, services continue until the redetermination decision is made.
If individuals are denied DDD, members or legal guardians can request an administrative review, and DDD services continue during the review. If the clinician agrees with the denial, the family has the opportunity to appeal the decision before a judge. Services continue until the judge makes the final decision.
Individuals who didn’t apply for DDD as children can apply as adults, Lehrich noted. They need documentation indicating they have a qualifying DDD diagnosis; their disability manifested before turning 18; and they have at least three of seven substantial functional limitations attributable to their qualifying DDD diagnosis.
With any questions about redetermination, Lehrich encourages individuals and families to call the DDD customer service phone number, 844-770-9500.
DDD members can also ask their support coordinator to refer them to VR. DDD membership is not required to apply.
DDD offers employment services for its members who are ALTCS eligible. These include Individual Supported Employment where DDD members are competitively employed in the community; Group Supported Employment which provides on-site supervision for a small group of members working in a community setting; and Transition to Employment which provides skill development to prepare members for community-integrated employment. Contact your support coordinator for more information about employment services for DDD members.
All job training through VR and DDD is individualized to help meet the member’s needs. Amanda Steele’s son Jordan, now 23, participates in Pathway to Work (https://azpathwaytowork.org/), a Tempe-based job training and development program for adults with developmental disabilities. He’s diagnosed with autism and intellectual disability. He’s participated in different job training programs based on his strengths and interests, including working at Dollar Tree.
“We as parents need to recognize that we have individuals that are growing into themselves,” Steele said. “We need to give them the ability to take the lead in their lives.”
Parents might initially worry that their young adult’s potential job earnings could jeopardize benefits from ALTCS or Social Security. ALTCS-eligible individuals can’t have more than $2,000 in a regular bank account, and any earned money can result in receiving less from SSI.
Nicholas Love, Director of Community Inclusion at the World Institute on Disability, recommends looking into ABLE accounts (https://az-able.com/). These investment accounts allow eligible individuals to save and invest money without losing financial eligibility for programs like DDD or Social Security. Special needs trusts can also provide savings without disqualifying an individual for these benefits. Love suggests visiting https://az.db101.org/ for more information and FAQs about earning money and maintaining benefits for young adults.
“Parents can be fearful of their child turning 18 and changing systems, but it will happen no matter what,” Love said. “Finding the right resources can put parents at ease. Anyone can accomplish their goals with the right resources and support. No system should be a barrier to our dreams.”