Deputy Administrator and Director
Center for Medicaid and CHIP Services
Centers for Medicare and Medicaid Services
7500 Security Blvd.
Baltimore, MD 21244
Dear Director Mann:
I know you probably don't actually HAVE a suggestion box, so bear with me while I transform my blog into one for this post.
Here's my recommendation-of-the-hour: Let's divorce Medicaid from the group of supports sometimes called Medicaid Waiver services. Let them go their separate ways. Call it splitsville. Divvy up the community benefits (and funding). Consult the attorneys (of course).
I know. It's painful and sad, and there might be a name change involved. But it's time. This just isn't working. And it never did. Sure, intentions were honorable. I'm sure the original matchmakers who created this little arrangement thought more people with disabilities and their families could be provided with needed services. They trusted the states to get the job done.
But the parties are dissatisfied. Waiting lists are long, years, often decades long. Services are too little and much too late. And the rules and benefits vary vastly from state to state. Those extra "little" lifelines like behavioral therapies and assistive technology that the Yentas thought states would provide to help out more families are actually being withheld until children with disabilities become adults with disabilities.
And then those same young adults, coming out of high school, are told they're eligible for a Waiver (a.k.a. Autism Waiver, Developmental Disability Waiver, Home and Community Services Waiver), but first they have to be poor. At 18. It isn't enough that they have a disability. Or that they and their parents will never be able to pay for the services they need. Essentially that young person with a disability needs to become needy and promise to stay needy for the rest of his or her life. Sure there are trusts, but then someone else gets to decide when, how and on what that young adult can spend their money. It's not a very good lesson in self-determination.
I'm sure the original intent was to make the eligibility process easier. After all, at the time this matrimonial unbliss began, virtually all people with developmental disabilities had to be on Medicaid to obtain necessary medical care for the rest of their lives. Good jobs for them were unlikely, therefore, insurance coverage via an employer was unlikely. So the assumption probably was that they will, out of necessity, be both poor and on Medicaid.
Sadly, though there have been some improvements, the unemployment/underemployment/sub-minimum wage possibilities are still with us. But the good news is that the Affordable Care Act is already a game changer for people with disabilities. Sons and daughters, if already covered under their parents' employer plans, can continue to be covered until they turn 26. (btw, Suggestion Box Issue No. 574: Can we extend that to 30 for children who have disabilities?)
That buys them eight more years to try to get a good job, to get a degree, to be an apprentice and learn a skill. Eight more years some of those young adults don't need Medicaid. Eight more years when they might not have to be impoverished. Yet.
But yes, to do those things, they still need some supports. But let's not call them Waiver supports anymore. Ability Services maybe. Or The [insert corporate sponsor or name of large foundation-that-wants-to-help-defray-the-costs-of-this-program here] Supports. Whatever. And, lord knows, we don't need yet another agency involved or application to fill out for young adults in transition. By all means, let's not make this harder.
By letting formerly-known-as Medicaid Waiver services go its own way, we can open the discussion about eligibility, when children and families could best benefit from services, and yes, funding. And, let's also open the discussion to means testing. (Readers, please don't flog me.) Some families can afford to pay for a portion of the services. I think it's important that those who can, do.
Breaking up is hard to do. Sniff. But surely we can be amicable about this can't we? For the sake of the children?
