Caregiving Takes Hefty Financial Toll, But Help Is Available

NPR's Kelly McEvers talks with special needs lawyer Theresa Varnet and social entrepreneur Al Etmanski about the types of assistance available for families caring for a special needs child.

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KELLY MCEVERS, HOST:

So how can parents of children with disabilities make sure their kids are taken care of, even when they're no longer around? Joining me now are Al Etmanski, who spent the last 20 years working with parents to find answers to this question and Theresa Varnet, an advocate for people with disabilities and a lawyer. They are both parents of people with special needs and welcome to both of you. Thanks for being here.

THERESA VARNET: Thank you for having us.

AL ETMANSKI: Thanks.

MCEVERS: Theresa, I want to start with you. You know, caring for a child with special needs, especially long term, can be a pretty major financial strain for some families. What, if any, help is available for them?

VARNET: Well, depending upon the state that they live in, there may be help from your State Department of Developmental Disabilities or Division of Mental Health Services. On a federal level, we have Medicaid. We also have Free and Appropriate Public Education available for our children between the ages of three and 22. After 22, anything the state does for you is basically charity. It's up to the individual state to come up with a network of services that are available.

MCEVERS: What can parents like the Lee's - the family in the story we just heard - what can they do to make sure their children are provided for financially after they're gone?

VARNET: I think a basic plan should be - for most parents should have something called a special needs trust. The special needs trust can supplement and provide a higher quality of care - you know, nicer eyeglasses, better dental care, recreation activities, perhaps pay for an advocate after they're gone to make sure that that child is properly cared for - somebody who will do what the parent did for free. And I would say as little as $250,000 would provide a nice safety net, if you were living in a state that provided the basics - the very - at least the basics. Unfortunately, there are some states that don't even provide the basics.

MCEVERS: So break that down for us. What are some of the states that do provide them, and what are the states that don't?

VARNET: Historically, the better states have been Massachusetts, New York - California has been very good. Vermont has been good. Some of your worst states would be South Carolina, Mississippi, Alabama, Louisiana. They have not provided well for people with disabilities.

MCEVERS: Al, I want to turn to you. We know that when parents are the caregivers, they're providing more than just money. I mean, this is about more than just money. What else needs to be put in place to make sure a child will be taken care of when the parents are gone?

ETMANSKI: Well, I think you alluded to that when Judy and James told their story and Justin's story. The thing we've discovered is that the will, the estate - those are really utensils. You need them to enjoy your meal, but the real meal is a good life. So for Justin, as parents, of course they have to make sure he's supported in the long-term. But they also see another side to Justin - his love of music, his wanting to make a contribution. And this is what we see as well. So our argument would be the two biggest handicaps faced by people with disabilities are one, their poverty, which Theresa has addressed, and two, their social isolation. And that's a specialty of our organization is to welcome people with disabilities into the community and to give them a chance to give their gifts. And that - that kind of rounds out, if you will, the equation (laughing) and leaves space for people to see your son and daughter's contribution, not just the needs that they have.

MCEVERS: Al Etmanski is the co-founder of PLAN - the Planned Lifetime Advocacy Network. It helps families address the financial and social well-being of relatives with special needs. And Theresa Varnet is a lawyer specializing in disability and advocacy. Thanks to both of you so much.

ETMANSKI: You're welcome.

VARNET: Thank you.

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