Jus saying again, I think you are overthinking it. Stop focusing on what "institutional care" means. There is a broad range. Call Family Voices and talk to over with them. You'll get more help there than here.

I don't know if I need the waiver. DC is probably borderline applicable. Depends on definition of needing institutional care.

I think you may be overthinking it. If you need this waiver, I would use the link to follow the steps and apply. If your child's ASD is disabling you will probably get the waiver.

Anonymous wrote:There is a definition somewhere of institutional level of care, and it has something to do with how many hours per week the person needs therapy or special services, and so if your child requires X number of therapy hours or nursing attention or other special services per week, your kid could qualify even with an ASD diagnosis. The best thing to do would be to call DC Health Care Finance to ask.

So anybody have any idea about how many hours per week of therapy/services is required to fit the definition if institutional level of care (for a Katie Beckett Medicaid waiver of ASD)? I couldn't find anything online, at least with respect to Washington, DC (not sure if it varies by location).

Anonymous wrote:I would contact Family Voices for those questions

+1

I am not sure about Washington DC, but in Virginia, among the Medicaid Waivers offered is the Elderly or Disabled Consumer Directed or EDCD Waiver. And families with children with Down syndrome and on the spectrum are being urged to apply for this waiver which often has no Waiting List.

It does provide in-home care and respite care based on the needs of the child. I hear the issue is often to find someone to do so at the rates paid for by the government. My thought on that end would be if you did not have to pay for the hours covered, maybe once or twice a year give the worker "a cash gift" to make the job worthwhile and to keep the person.

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On the more important topic of Medicaid Waivers, I do not know the ins and outs of a child under 18 on Medicaid health insurance, but for adult services:

1- Medicaid Waivers are the funding stream for most adult services except for employment support services which are covered from federal monies now through the Department of Aging and Rehabilitative Services.

2- There are long waiting lists for these funding streams the Developmental Disability DD Waiver or the other Intellectual Disability ID Waivers.

3- BUT one can apply for either waiver once the child is age 6 or over. So if there is any chance your child might meet the criteria I would do so as soon as possible.

4- Most any young child has a full evaluation including a full psychological evaluation around age 5 to receive special education services and placement in school. This would give you the kind of psychological evaluation needed in applying for a waiver.

5- So my suggestion is to just go and do it and get on the appropriate Waiting list. If you get on the DD Waiting List at least you will have a number and can see yourself moving up a list. If you are on an ID Waiting list right now you never really know except that you need to be on the Urgent Care list to have any hope of ever gettng a Waiver. And the simplest reason for gettng on it would be a caregiver turning age 55.

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Get any financial assets out of a child's name by age 13 who has a disability AND make sure no one is going to leave money directly to a child in a will - only to a person's Special Needs Trust - with the exact legal wording.

-- This may be kind of tough if you have a 529 college savings plan, but I think they would count that, too so ask a lawyer.

-- If there are funds which can't be changed, then ask about a special trust called an OBRA Trust.

WHY??

A final note on qualifying at age 18 for Benefits. To establish Medicaid eligibility or reestablish it as an adult if a child has had it, there can be no countable assets in a teen/adult's name over the limit of $2,000. There is a "5-year lookback" period with very specific questions on whether any assets have been transferred or not.

My focus is on young adults and I do know that at age 18 one must have established eligibility for Medicaid health insurance to accept a Waiver slot if it is offered. AND if there is any issue in getting eligible for Medicaid, then one might have to pass on the waiver which has a window of being used within 60 days.

For young children it is just the idea that since you are getting the formal testing done at no cost in school, then apply for a waiver and get on the Waiting list. Also, once on the waiting list, you can ask for Targeted Case Management should you need assistance in applying for other benefits and/or connecting to other area services.