In Texas, Medicaid / HHSC can now be applied to Congregate Care Facilities (March 2025)

Many parents of adult children with IDDs in Texas have been frustrated that Medicaid Waiver / HCS funds cannot be used to help pay for private “congregate care” or intentional communities (however one might refer to them). This has meant that parents have had to shoulder the whole cost of care, for the rest of their child’s life, if they wanted to place their child in anything other than a group home. In Texas, Medicaid paid only for placement in a stranger’s home, often with 4-6 others, and not in a larger community of others with IDDs, what some call a “congregate care” or what we might think of as an assisted living setting facility. Communities for adults with IDDs in Texas are private and cost on average $3,500-$5,000 / month. There are not many of them, fewer still any with vacancies, leaving most parents with limited placement options for their adult children. 

SSI pays only about $900 / month. That’s a huge gap for parents to try to fill on their own!

Mark Olson, LTO Ventures, explains the challenges in this video:

Mark has been trying to establish a congregate care community in Boerne / Kendall County, but in that part of Texas, land prices have shot up–doubled–in the last few years.

Texas has been reluctant to allow any Medicaid funds to be used for assisted living facilities, or intentional / congregate care communities, repeatedly justifying their position by classifying anything other than placement in a private residential home as placement in an institution. There was no middle ground.

Because the Texas Administrative Code made it impossible for HCS Medicaid waiver funds be used to fund “institutions,” therefore, private residential communities in Texas do not accept HCS funds, the Medicaid waiver program for mentally disabled people. 

Most parents of an adult child with an IDD would prefer to place their child in a communal or congregate care setting on a campus where their adult child can be seen by others on a regular basis, walk around outside, talk to people, make friends, and have needed supports and activities, instead of being placed into someone’s house, off in a spare bedroom (often with another person with an IDD), usually in some sketchy part of town where they cannot walk safely outside, are invisible–and no, they are not necessarily “part of the larger community.” Maybe this is not a fair assessment of group homes, but from what I have gathered, parents do not want their adult child warehoused inside a stranger’s home after they die. I certainly don’t.

I want to announce the good news that, at least according to Mark Olson, the regulations in Texas have recently changed. Or at least, the legal definition of an institution–or something like that–has changed, at least on paper.

Mark organized a large coalition of parents to pressure the Texas legislature to change the wording of this regulation so that Medicaid waiver funds can potentially be applied to these often costlier private settings, or to defray costs of the care provided within them.

Mark indicated it is still difficult to get Texas Health and Human Services to pay, but maybe over time, things will get easier? Of course, parents will still need to fill the gap between what small amount HCS pays and what the facility charges. I do not know how much they pay now toward residential care, but whatever it is, it is certainly better than zero.

Thank you, Mark Olson, for fighting the good fight!