The Lessons I Learned From Having A Brother With Special Needs
January 18, 2019One of the greatest joys of my life is my brother, Michael. Despite the fact that he has special needs, he always has a smile on his face every time I see him and the excitement in his voice when we talk warms my heart. Recently, my mother and I were reflecting on what we have learned in the almost 40 years she has been taking care of my brother. Below are some of the lessons we learned:
Infancy
1. Trust your instincts. My brother was way behind on the average baby milestones and my mother took him in for several visits before his doctor diagnosed him as having special needs. Her advice is that no medical degree or certification can come close to a parent who has daily contact with her child.
If you feel something is wrong, trust your gut and keep asking. Change doctors if needed. The earlier your doctor can diagnose your child, the earlier your child can be treated.
2. Apply for benefits. Do not assume you won’t qualify for benefits. Contact your state to find out about Medicaid benefits for special needs children. You may be entitled to Medicaid benefits, regardless of income, often in the form of a Medicaid waiver for special needs children.
3. Choose the right medical plan. Evaluate your employer healthcare benefit options to choose the plan that will provide the most benefits. Consider using medical savings plans like an FSA or an HSA to save money pre-tax that you can use tax-free for qualifying medical expenses.
School Age
1. Understand your rights to school services for special needs children. There are three federal laws that apply to children with special needs: the Individuals with Disabilities Education Act of 1975 (IDEA) that ensures your child can get a free education, section 504 of the Rehabilitation Act of 1973 to protect students from discrimination based on disabilities, and the Americans with Disabilities Act of 1990 to give reasonable accommodations to children with disabilities.
2. Get your child evaluated. In most cases, an evaluation is the first step to enrolling your child in a special education program. Consider contacting your local school to find out about the process of entering your child into a special needs program.
3. Explore school options. Review the special needs programs your school offers to see if your child will get the care they need through a public school or if a private school may be a better option. Special needs services also extend to pre-schoolers. Contact your local school system to find out the programs offered and local support organizations for your child’s diagnosis for guidance on finding the best program for your child.
Adulthood
1. Decide where your child will live. Will your child live in your home, a group home or an independent living community? Some group homes and independent living facilities may have a long wait list, so find out the details. Will your child need a day program or will they be able to work? If your child can work, start thinking about government and other nonprofit job search programs for adults with special needs.
2. Get guardianship or a power of attorney. My brother’s day program had an art program and soon an art association presented his artwork and his art started selling. Because my mother did not apply for guardianship and she did not have a power of attorney, she found that she had no say in how the art association presented or sold his artwork.
Luckily, I had a legal plan through my employer that extended to family and my mother was able to get guardianship of my brother. If you feel your child may need assistance making decisions as an adult, consider getting guardianship or a power of attorney. Contact your employer about group legal plans or legal services to help you create the legal documents.
3. Consider protecting your child’s benefits with a trust. In most cases, if your child has more than $2,000 in countable assets, they may not qualify for government benefits. A special needs trust can be a standalone document or part of a last will and testament. The trust generally can hold assets for the benefit of your special needs child without disrupting your child’s benefits. Depending on the type of special needs trust you set up, the trust funds might be used to pay back Medicaid, so consult with an attorney to see if and what kind of special needs trust is right for you.
We did not learn about many of these things until after the fact. Don’t make our mistakes. Consider using the resources above to help you make the most informed decisions in the care of your special needs child.