For special needs parents: 13 mistakes to avoid

There’s someone with special needs in your family — possibly a child or grandchild. What now? Here, in order and based on the experience, you’ll find baker’s dozen of mistakes to avoid:

Mistake 1: Overreacting when you first learn a child has special needs. Sometimes it will be obvious at birth or before that a child has special needs (Down Syndrome, for example). Other times it will be a while (as with autism spectrum disorder). In any case, there is help available and it’s not as bad as you think. This is not the time for mourning and despair.

Mistake 2: Underreacting when you first learn a child has special needs. Just as you don’t want to overreact, you don’t want to underreact either. For some disorders you’ll want to make sure that time-sensitive interventions, like speech and language therapy, start quickly. In many cases, a child’s delays in speech and language will go away with time. Parents can be too sensitive. But if your child is persistently behind development indexes, get moving, starting with your family doctor.

Mistake 3: Not taking full advantage of what the schools have to offer. If you have a child with special needs, then for a decade and a half the schools will be one of your strongest allies. The schools can provide everything from speech therapy to contact with a variety of peers, both with and without special needs. The key to making all this happen is the IEP (Individualized Educational Program), a document that lays out your child’s program and ways of checking on progress. This document is generated interactively at an IEP meeting. To take full advantage of what the schools have to offer, be a good citizen, helping whenever possible as a parent volunteer. When you and your child help at the bake sale, for example, you build good will all around.

Mistake 4: Being threatening and bossy with the schools. You absolutely need to know your child’s rights and be a strong advocate for a comprehensive IEP. At the same time, you have to remember that getting a strong IEP on paper is just the start. If you bully your way into a good plan on paper, you’ll get less cooperation as the IEP is actually implemented. Day-to-day, the school has a lot of leeway in implementing that plan. If you have been constructive and helpful in your dealings with the school, those day-to-day matters are more likely to go in your child’s favor.

Mistake 5: Waiting too late to get your finances in order. Raising a special needs child is a difficult task. It is easy to let other things slide. But you need to finance your own retirement and also be able to help your child along. In personal finance we refer to the “magic of compounding,” or the wealth-building power of starting a saving and investment plan early. You need this force working for you and not against you. Therefore in a special needs family you need to do all the basics — budgeting, saving, investing — but even more diligently to meet your special challenge.

Mistake 6: Waiting too late to explore vocational possibilities for your child. By law, the IEP will begin to include these in later school years, but you shouldn’t wait until then. Your child’s quality of life in adulthood depends a great deal on what kind of job is possible. Everywhere you go — the restaurant, the library, the ballpark — be looking for jobs that you think your child might be able to do. And don’t assume your child would have to do that job alone. There may well be job coaching available, or that same job may exist in a friendly or sheltered environment.

Mistake 7: Assuming your child can’t play sports or be in youth activities. In some cases, physical or mental disabilities are so severe that a child truly can’t play sports or be in youth activities. However, it’s a mistake to assume that nothing will be available. There are opportunities for diverse activities, ranging from Little League Challenger baseball to adaptive Scouting programs. Even a child who can’t directly participate may benefit from being on the “friendly edge” of a youth activity — for example, serving as a bench assistant or honorary assistant coach for a sibling’s youth soccer team.

Mistake 8: Not getting the right asset allocation for your investments, or getting to the place where you even can invest. A recent study in the American Economic Review showed that special needs families tend to under-invest in higher return assets such as stocks. These families are keeping too much of their assets in bank accounts or certificates of deposit. Over the long haul, these assets just don’t generate the return needed for future financial security. And of course, there are many special needs families that are so hard pressed financially that their income each month is fully committed, leaving nothing to save or invest. In these cases it is especially important for parents to become fully informed about public assistance programs that may help with special needs children and adults.

Mistake 9: Not being proactive as the age of majority approaches. Some kids with special needs will be unable to adequately make decisions on their own behalf. In these cases, you need to consider being appointed as guardian and conservator. It’s a fairly simple court procedure and it’s well worth doing. If you do nothing, your child can make big money mistakes and big personal mistakes, such as getting married without your permission. You could even be shut out of a hospital X-ray room when your child is in for a test. With your guardianship order, however, the medical staff will know that you’re fully empowered to make decisions on your child’s behalf.

Mistake 10: Not intelligently applying for available aid. Depending on the degree of disability and age, Medicaid and Social Security Disability are possibilities. Naturally, some people are reluctant to apply for these programs — but that’s what those programs are for. It’s especially important for a special needs child to get onto the waiting lists for some forms of assistance, as those lists are years long. The so-called “Medicaid waiver” program is a great resource for some special needs adults, but is known for long waiting lists.

Mistake 11: Leaving assets in a will to a special needs child in order to see that the child is cared for. If parents work hard to see that a special needs child is cared for after they’re gone, it’s important to see that their hard work doesn’t go for nothing. Specifically, if a special needs child directly inherits assets, that child can be disqualified from some programs. In a case such as this, the inheritable assets need to go into a special needs trust or similar vehicle that a lawyer can tell you about.

Mistake 12: Not providing for the future housing of a special needs child who becomes an adult. A special need adult’s quality of life depends directly on the housing situation. Years ago, special needs adults might be housed in institutions. More recently, group homes are a possibility. More home-like settings are showing increasing promise, including the “sponsored residential model.” Some of us are working on a new model in the Simplicity House project.

Final mistake, number 13: Not reaching out for help. Parenting a special needs child is often a lonely task. Special needs parents need to reach out to those who can help provide respite care and other forms of support. The Arc is a great example. Regionally, there are more specialized organizations. One model I’m familiar with is the Shenandoah Valley Autism Partnership. Special needs parents especially need to involve their faith communities. Some congregations have begun to place priority on reaching out to special needs families. A house of worship is one place where people with special needs can be fully embraced and involved.

Resources linked to in the article above:

“You Are Not Alone: For Parents When They Learn That Their Child Has a Disability,” from the Center for Parent Information and Resources: http://www.parentcenterhub.org/notalone/
“Early Intervention,” from Autism Speaks: https://www.autismspeaks.org/family-services/tool-kits/100-day-kit/early-intervention
“What is an IEP?” from greatschools.org: http://www.greatschools.org/gk/articles/what-is-an-iep/
“Tips for a Successful IEP Meeting,” from greatschools.org: http://www.greatschools.org/gk/articles/tips-for-a-successful-iep-meeting/
“The Magic of Compound Interest,” from Money magazine online: http://time.com/money/4343323/compound-interest-returns-explained-magic/
“Transition Goals in the IEP,” from the Center for Parent Information and Resources: http://www.parentcenterhub.org/transition-goals/
“Challenger Division,” from Little League: http://www.littleleague.org/learn/about/divisions/challenger.htm; “Scouting Inclusion Policies & Special Needs,” from Support for Special Needs: http://supportforspecialneeds.com/2011/12/21/scouting-inclusion-policies-special-needs/
“How Children with Mental Disabilities Affect Household Investment Decisions,” from the American Economic Review: https://www.aeaweb.org/articles?id=10.1257/aer.p20171145
“Special Needs Children Turning 18 Years Old,” from Financial Advisor magazine: http://www.fa-mag.com/news/special-needs-children-turning-18-years-old-11762.html
“Special Needs Trusts and Government Benefit Programs:
Viewpoints on Financial Planning,” from BB&T: https://www.bbt.com/wealth/retirement-and-planning/trusts-and-estates/special-needs-trusts-and-government-benefit-programs.page
“Avoid the Biggest Mistake of Financial Planning for Special Needs Kids,” from AOL Finance: https://www.aol.com/article/2012/09/28/special-needs-children-financial-planning-mistakes/20300914/
“Housing Options for Adults with Special Needs,” from Special Needs Answers: http://specialneedsanswers.com/housing-options-for-adults-with-special-needs-14975; “Simplicity House: A New Living Idea for Changing Times”: http://simplicityhouse.org
“The Arc, For People with Intellectual and Developmental Disabilities: https://www.thearc.org/; “Shenandoah Valley Autism Partnership: Where Parents and Professionals Come Together: http://valleyautism.org/; “Special Needs Ministries and the Church: Research, Ministries, Links, Leaders, and More,” from Christianity Today magazine: http://www.christianitytoday.com/edstetzer/2013/january/special-needs-ministries-and-church-research-ministries.html