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  • Posted April 9, 2018

Special Needs Planning – More Than An IEP

When you have a child with a disability, much of your energy may be spent in ensuring he/she receives the education they are entitled to. And make no mistake, this can be a HUGE battle. However it’s not the only consideration our families have. We need to think beyond school, and we need to think about ourselves (parents/siblings). This isn’t selfish, quite the opposite. Because if we don’t take care of ourselves, we’re setting the individual(s) with the disability(ies) up for future failure.

Families should make the time to think about their future – what do parents want to do, who will take over when they are gone or can no longer fill the role, etc. Speaking as a parent, the first thing which comes to my mind is “who has the time or bandwidth?”. This is why I think it helps to work with someone, let them do the heavy lifting. It’s why I hired an attorney for son’s SSI claim even though I felt I had an “airtight” case; as well as hiring another attorney for guardianship and estate planning.

The Social Security attorney will be paid by the first payment we receive from Social Security – if we don’t get paid neither does he. And I’m not going to miss the money, because I don’t have it now. For me, it was a no-brainer. Guardianship is a different story, you will need to decide if it’s appropriate for your situation; or, is supported decision making a better solution. Find a support group, talk to those who have gone before you and do your best to make an informed decision.

Estate planning is non-negotiable in any situation, but especially when you have a child(ren) with 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.

Financial planning should be more than investments and insurance. Yes, both of these play a role, but your 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 (or just haven’t had the time to research). 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? Are you sacrificing your happiness to provide for your child (we all do this, to some degree). Perhaps there are resources and options you’re not aware of to give you a break (respite) or lower your monthly expenses allowing you to treat yourself now and then.

Education is important, and having hired an education consultant to help my son transition from middle to high school I understand it’s not always easy or inexpensive. 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).

I’ve been doing this “alone” for (6) years now, since my wife passed in 2012. The biggest mistakes I could have made would have been 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 “noone 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.


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