SSI & Private Pay question

[Guest guest]

, Sherri or anyone with knowledge of SSI - pls help me understand something

about ‘private pay’ arrangements...

I hear from lots of families, whose children are entering adulthood or who have

exited special education, and these families are without with Home Based

Community Support Waiver or the Residential Waivers. Essentially they will rely

on their 18+ year old’s monthly SSI payments ($674/month) to pay for adult

services. They often supplement this with payments from the family to various

providers. (social service providers are now accepting private pay arrangements

for day programs; Elmhurst College’s ELSA program is private pay; and now we

are reading about this new Turning Pointe arrangement – and there are many

many others cropping up all over the place.)

These private pay services or programs may provide high quality services and

supports to adults with DDs. In exchange, they charge fees that far exceed what

the average adult with a developmental disability, who is not gainfully

employed, can afford to pay out of their monthly SSI max of $674/month.

My question is this: When we go through the eligibility determination for SSI

and Medicaid, our children become their own ‘head of household’ for IRS/SSA

calculations, correct?

So can we legally make these payments for private pay services for an adult

child without jeopardizing their public benefits? Can they be paid through

their SNT’s? Can parents just write the checks themselves?

Or – and I’m thinking this might be the answer – do you forego/lose

SSI/Medicaid/Waiver eligibility/funding when you decide to enter into one of

these private pay arrangements, because now the adult with the DD is clearly

depending on their parents for financial help? Which may not be a big deal for

the families, because if they can afford these service fees, they probably

don’t need the public funding anyway?

I’d like to understand this better so I’m not telling people the wrong thing

when they ask me. I’ve never really thought it through before now. It’s a

question that comes up more and more as people are exiting school without the

old 72D funding that used to come more routinely upon exit.

Thanks in advance.

L.