The journey to get here has been challenging and rewarding. You couldn’t be prouder of your child for successfully navigating an educational system that simply wasn’t built for him or her. You are both grateful for the services and benefits that have made it possible to succeed. And, this isn’t the end. The next step may be college. Your child may feel ready to take the intimidating plunge of life away from home, but the unknowns are many. What will this next phase of life look like? What supports will be available? Will needed public benefits continue? How will your role change as your child enters adulthood? While every situation is different, there are some things every family of a child with special needs should consider before driving up to campus on move-in day.
Do a needs analysis.
Talk with your child about what life and learning will be like in a college setting. Identify what supports currently in place will need to continue and whether additional supports might be needed. Consider the supports you personally provide at home for ADLs (Activities of Daily Living) and how those could be best managed at school.
Know the benefits picture.
Depending on whether your child is receiving federal or state benefits, such as cash or medical assistance, you’ll want to understand whether anything will change once your child turns 18 and leaves home for school. This will include identifying basic eligibility criteria, understanding what periodic assessments may be required, and determining key deadlines for submitting applications or required documentation.
Understand resources available on campus.
There is a significant shift of the support dynamic for children with disabilities at the college level. While your child’s secondary school education was proactively managed through an IEP (Individualized Education Plan) or a 504 plan, over which you played a key role, colleges work directly with students on a reactive basis (i.e., the student generally is required to request support). Although colleges are not subject to the Individuals with Disabilities Act that high schools are, they do fall under the Americans with Disabilities Act designed to ensure equal access and protect individuals from discrimination. Accordingly, almost all colleges have additional services for students with learning, attention, and other disabilities, but these are often not well-publicized. In order to access services or get needed accommodations, your child will need to register separately with the school’s disability services office. (Accommodations might include note-takers, audio recordings, use of a laptop, or different testing arrangements.) Being notified by the school that a disabilities services office is available, and where it is located, is important. If that does not occur, however, you proactively may request this information at the beginning of the school year so you can assist your child in making an initial attempt to access the accommodations needed.
Consider information access.
When a child turns 18, he or she is considered a legal adult which shifts access to and authority over medical, financial, and educational records from parents to the child. Unless you already have a signed HIPAA (Health Insurance Portability and Accountability Act) release form, you will want to talk with your child about the importance of your accessing medical information and how you might be able to assist your child in making decisions.
Empower your student and create an action plan.
In most cases, benefits for individuals with special needs were historically designed more for those who stay home than individuals who are seeking advanced education and a meaningful career path. Compounding the challenge is the shift from parents to the young adult to drive the supports provided by a school. This can be a major stumbling block for many students who always have relied on their parents to do the heavy lifting within a proactively supportive system. The ability of a student to self-advocate can spell the difference between success and failure. Consider the story of Anna Landre, a high school valedictorian attending Georgetown University who recently challenged significant cuts made by her state in the supports she was receiving through the Medicaid program. The proposed decrease in supports would have jeopardized her ability to continue her college education with profound future life impact. Where others might have understandably given up, her perseverance and public support ultimately resulted in a reinstatement of those benefits. Helping your child to understand that, once on campus, the burden for advocacy and requesting support will rest primarily on him or her, and assisting in devising a plan to obtain that support, will be key.
Sending a child to college is challenging even under the most optimum of circumstances. When that student is an individual with special needs, understanding, conveying, and obtaining needed support is critical. To the extent you are able, identifying and understanding available public benefits and the hurdles which may exist will help in knowing the steps you and your child should take now to guarantee your child’s success.