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teacher with student in classroom  - special needs child individual education planning
  • Posted July 20, 2020

Special Needs Planning: More Than an IEP

When you have a child with a disability, much of your energy may be spent ensuring they receive the education they are entitled to.  It’s a huge battle to be sure, but it’s not the only consideration families should have. We need to think about special needs planning as something that lasts a lifetime — otherwise, we’re setting the individual(s) with the disability(ies) up for failure decades down the line.

Families should make time to think about their long-term future role as the disabled child moves into adulthood and beyond.  It’s a daunting conversation that encompasses many complicated topics: estate planning, guardianship/conservatorship, appointing caregivers when parents can no longer fulfill that role, financial planning, housing, and everything in between. Speaking as a parent, the first thing which comes to my mind is “who has the time or bandwidth to plan all of that, when I already have so much on my plate?” This is why I think it helps to work with someone who specializes in planning these things and allowing them do the heavy lifting.  It’s why I hired an attorney for my son’s SSI claim even though I felt I had an “airtight” case, and it’s why I hired another attorney for guardianship and estate planning.

As you consider your child’s long-term special needs plan, ask yourself about how you will be handling the following:


Once your child turns 18, you need to determine whether they can live independently or if they still need assistance in decision-making and self care.  Guardianship is one option, but it may not be appropriate for your situation. Depending on your child’s needs, options like supported decision making may be a better fit for you.  Do your research, find a support group, work with members of your child’s support team and do your best to make an informed decision.


Estate planning is non-negotiable in any situation, especially when your child has a disability. This is NOT about you, it is about ensuring your child(ren) is not left alone to figure things out when you’re gone. It’s hard enough for families without disabilities.  This is one area of special needs planning where having an expert is extraordinarily helpful.


Financial planning should be about more than investments and insurance. Both of these things play a role in special needs planning, but life has more nuances than this and so should your plan. Consideration should be given to YOUR goals and how you can achieve them – are there resources you hadn’t considered or weren’t familiar with? Discuss social security – for you and your child; taking into consideration the impact of your filing if your child qualifies for the Adult Disabled Child benefit.


What does retirement look like for you? For your child? Will your child have enough to enjoy the quality of life they have now when you are gone, or do you need to put guardrails in place? What about you? Answering these questions is critical to the success of your child’s special needs plan.  Look for resources and ways to give yourself a break (respite) or lower your monthly expenses, allowing you to treat yourself now and then.


Education is important, and helping your child get the services they need can be difficult and expensive. However; there will be lulls when you can, and should, think of yourself. Most importantly, you’re not alone. You’re not the first, or only, parent to face challenges – even if others haven’t faced the same ones, the tools they used to cope may help (or you can adapt them to your situation).

The biggest mistakes you could can make is focusing on just one aspect and not asking for help.  “Outsource” what you’re not good at, and help others using your strengths. You don’t have to be a charity, but I do believe you need to treat others as you would like to be treated (fairly). Again – you’re NOT alone. I know how overwhelmed I have felt, and I have thought “no one else understands what I’m going through”. Then I forced myself to find others who have overcome hardships and I mined them for information and strength (and still do). You can too.