Keystone Hope Special Needs Foundation Helps Families Plan

Do you know an autistic child or adult?  Or someone who lives with Downs Syndrome?  Maybe a good friend of yours has Multiple Sclerosis. 

If the parents or legal guardians of these folks pass away, and leave $2,000 or more as inheritance, the dependant will lose their Social Security, and their Medicaid card.  Frightening, but true.  It’s the law.  Let me explain a little in non-legalese…

I have an Uncle, Allen, who lives with mental retardation.  He’s in his fifties, and had a wonderful career at Giant Eagle.  He loves NASCAR and the Steelers, and any food made with potatoes.  He lives in my grandparents’ house, and has absolutely no health problems, besides a little extra winter weight.  If genetics are any indicator, he’ll live a very long life.  My grandparents are both alive and in their nineties.  Awhile back, Allen’s two brothers began a conversation about who would care for Al as he got older, after my grandparents passed.  It seemed to make sense to leave the house to Al, and then to use those proceeds to cover the cost of his expenses, while he lived in my dad’s house.  Years passed, and the discussion came up again.  This time, it was decided to leave everything to my dad to care for Al.  By that time they knew that Al would lose his benefits if he inherited anything.  So, for awhile the family went along with this plan, although not in a formal way. 

Here is where life kicks in.  My gram’s health began a downward progression- multiple myeloma, Alzheimer’s; she got worse and worse, and we became more and more worried.  Suddenly the question of Al’s care became the subject of many more dinner conversations.  My parents too began discussing long term care insurance options and wills for themselves, wills for my grandparents- and there was the question of Al’s life, my grandparent’s long-term needs, it seemed that we needed serious help.  But from whom?  We’re a college-educated bunch, and we’ve always had Al’s best interest at heart- but I’ll be honest with you, folks.  It was not nearly good enough.  We were trying to figure it all out without having all the information – we were going to end up hurting.  Under the guidance of their financial advisor, my family talked with Natalie Ruschell.  She’s an attorney that specializes in special needs trusts.  We’d never heard of that.  She explained that the trust would protect Uncle Al’s benefits because the inheritance would go to the trust, not to Uncle Al directly.  My dad, the trustee, would be able to use the funds for whatever Al needed, and he’d be able to keep his Medicaid.  She explained the amount of inheritance tax that would be applied if my grandparents left everything to my dad would be significant.  She explained that if my parents got divorced, that inheritance would be subject to division.  Even if it was earmarked for Al, my mom could still take half.  The more she told us about special needs trusts, the more we could see that we had needed this advice for a very long time.  We set up the trust.  We got everyone’s wills straightened out.  Trustees and backups were put into place.  We sleep a little better now, and Gram is doing much better.

The story does not end there.  You see, a few months later, I had dinner with Natalie.  She started telling me about an idea she’d been mulling over.  She wanted to start a nonprofit that would pay to set up the special needs trusts like the one she’d just developed for my Uncle Al.  I nodded.  It had not been a cheap thing, but it was worth every cent- I knew that first hand.  I understood very quickly that families with members who had special needs might decide to bypass the special needs trust because of the expense.  What if we raised money to cover the trust development, and then connected those families in need with attorneys who focus on special needs trusts?  I began to think that I’d love to do just that- I’d love a job at this place.  She read my mind, and asked me to help her set up Keystone Hope Special Needs Foundation.

 And here I am.  I’m telling you about it.  I’m telling you to connect me with the families you know who can use the information we have – so many people are not aware of the laws surrounding estate planning. 

Even if they can afford to pay for the trust development, send these families my way.

 If you know an attorney who practices in the world of special needs trusts, I need to meet them.

 If you know an autistic child or adult, or someone who lives with Downs Syndrome or anyone at all who meets the federal definition of special needs, their parents and guardians can plan for the very best, instead of worrying about the worst-case. 

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Keystone Hope Spedial Needs Foundation is a nonprofit organization based in Midway, Washington County, PA whose  mission is to enable families, through legal advocacy and estate planning, to protect the financial futures of their family members who have special needs.