A Chicago mom’s primer on being a parent to a child with special needs

Let’s be honest, I can’t possibly tell you everything you need to know about raising a child with special needs in  single article. But as a parent of a child with special needs, I also know your time is limited.

So if I had just five minutes of your time, this is what I would want you to know.

First and foremost, be patient with yourself. For those of you who are new parents, give yourself some time to love and accept the child you have been blessed with. Know that it takes time to accept your child’s disability. It is difficult to raise a child with special needs, and you will always have to advocate for your child, but the rewards are great and

you are not alone. Remember to take care of yourself, find time for your partner, your other children, and your friends and family.

This is not a sprint, but a marathon! Try to find other parents who share your struggles

and joy. Find someone who is ahead of you on this journey. It can be easier to follow in someone’s footsteps than to always have to create your own path.

Knowing that you will be your child’s first and strongest advocate, it is important that you become as educated as you can about your child, their diagnosis, their unique  strengths and challenges. Research their doctors, therapists, treatments and education to make sure your child has every opportunity to be successful.

Early is always better

It also is essential that your child receive services as early as possible. Know that the first five years are crucial in any child’s development. If you have questions about your child’s development or are already aware of delays, your child can be evaluated and may be eligible to receive services through Illinois’ Early Intervention System.

Child& Family Connections is the starting point for children under 36 months old and a referral can be made by you, a family member, doctor, day care provider or anyone concerned about the development of your child. To find out more, use the Illinois Department of Human Services website Office Locator to locate an Early Intervention office in your area or call (800) 843-6154.

Currently, to qualify for EI services, your child must either have an eligible diagnosis or demonstrate a 30 percent delay in at least one of five areas (physical, cognitive, communication, social-emotional and adaptive). If your child does not qualify and you still have concerns, you can explore other approaches to intervention using your medical insurance or paying privately.

Once your child turns 3, they may be eligible to receive services through the public school system’s Early Childhood Education. This transition process should begin at age 2½. If your child is enrolled in EI, your service coordinator will help you during this transition process. If your child is not using Early Intervention services, you can do this transition on your own. To begin this process, call your neighborhood elementary school and request an evaluation to see if your child qualifies for services. If your child does not qualify for special education services through the public school but still has delays or you have concerns, talk to your pediatrician and seek out services on your own.

Although your local school district is primarily responsible for providing special education services to your child, you may also want to explore completing a PUNS—Prioritization of Urgency of Need for Services—survey. It is a statewide database that records information about individuals with developmental disabilities who are potentially in need of services now or in the future. The state uses the data to select individuals for services as funding becomes available. Your child will not be eligible for any government benefits unless they have completed their PUNS and update it yearly.

Forecasting the future

It is never too early to start planning for your child’s future by becoming educated about special needs trusts and completing your will.

Once your child turns 18, the state no longer considers the family income, only your child’s. If your child has more than $2,000, this will disqualify them from many government benefits, including Social Security Income. However, you can save money for your child’s future by creating a special needs trust without disqualifying them from these benefits. Parents need to consult a special needs attorney to set up this trust.

Planning for transition into the adult world for children with special needs should begin at age 14½. At this time, transition should be discussed and transition goals written during your child’s Individual Education Plan meeting at school.

If you need assistance, transition specialists can attend your child’s IEP meeting to help.

Know that in Illinois, your child can remain in school until they turn 22 as long as they do not accept their diploma. Once your child accepts their diploma, the high school is no longer obligated to provide any support or services.

These three years of transition can be a time for your child to investigate employment opportunities, work on vocational skills and explore additional education at a community college or vocational school.

If your child will seek employment in the community and can realistically do so independently, a Department of Rehabilitative Services representative should be present at your child’s IEP meetings. If your child will not be able to work independently once they leave high school, it is important to start exploring other options such as a day program or sheltered workshops.

Your school should be able to provide you with organizations that offer these services in your area.

Age 18 is a busy time if you have a child with special needs. No matter your child’s disability, once they turn 18, in the eyes of the law, they are considered an adult and are given the responsibility to make decisions for themselves unless you have power of attorney or guardianship.

If your child is unable to make medical or financial decision independently, it is important that you consult an attorney to determine which option is best for your child and begin the process.

At 18, your child may qualify for Social Security Income Benefits and Medicaid.

Applications for Social Security Income can be completed online at ssa.gov/disability, by telephone at (800) 772-1213 or in person at your local Social Security office. Visit the Social Security Administrative website to make sure you have all the necessary documentation and information before beginning this process.

Once your child has been approved for Social Security benefits, it will be easier to apply for Medicaid. To find out more information on applying for Medicaid or to complete an application, visit getcoveredillinois.gov.

In Illinois, your disabled child can stay on your commercial insurance until you discontinue your policy. You should consider keeping your child on commercial insurance if possible since this will give them more options for medical care. When the time arrives for you to apply for Medicare, you also should inquire as to whether your child might qualify.

A parent’s true fear

Last, but not least, the thing I fear most as a parent of a child of special needs is what will happen to my daughter once I am no longer able to care for her. Although I will never be able to calm all my fears, something that helps is keeping a Letter of Intent. A Letter of Intent is a document written by you or other family member that describes your child’s history, their current status, and what you hope for them in the future.

I wish I had more time to talk to you about how to write measurable IEP goals, answer insurance questions, or tell you about the wonderful programs offered through your Special Recreation Program (specialrecreation.org).

If I had more time I would share with you all the rewards and joys I have enjoyed raising my daughter, discuss with you strategies in working with your school district to get the best services for your child or how to organize all the paperwork we collect.

I wish I could be there to give you the pep talk you need before you go into your IEP meeting or calm your fears before your childhas to go in for a medical procedure, but my time is up and I have probably already overwhelmed you.

I wish I had the opportunity to touch each one of your lives since mine has been so blessed, but I know that is not possible. My hope is that you will find someone in your life who can support you on this journey and then you will turn around and provide that support to the next family who needs it.

Cara Long is a state-credentialed parent liaison at Easter Seals DuPage and the Fox Valley and a member of Special Parent’s advisory board. She specializes in helping parents navigate special needs. She is a mom of a child with special needs.

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