Last week, the Energy and Commerce Committee held a markup session for a bill that would refund the Children’s Health Insurance Program, better known as CHIP. During the session, there was contentious discussion on topics ranging from the current disaster in Puerto Rico to Republican opposition to the Affordable Care Act. Many disability activists, however, were anxiously awaiting a different discussion. Congressman Bobby Rush (D-IL) planned to introduce an amendment to the CHIP bill that would make it possible for institutions to take money intended to support disabled people in their homes and communities.
CHIP itself is an important disability issue. It was created to provide health care for children and pregnant women in low- to middle-income homes whose annual incomes were only a little bit higher than the Medicaid limit. CHIP covers 9 million children and 370,000 pregnant women. Funding needs to be periodically reauthorized by Congress. Last month, Congress allowed CHIP’s financing to lapse. If the program isn’t reauthorized soon, states could run out of money to provide needed healthcare services to millions of American children, many of whom have disabilities.
Congressman Rush’s proposed amendment had seemingly little to do with CHIP or helping disabled children. Instead, the amendment would weaken the Medicaid Home and Community Based Services Settings Rule. The Settings Rule ensures that federal money only goes to residential supports that are in the community. For example, home care hours for a personal care assistant might be funded this way. The amount of money involved is already inadequately small — Disabled people, particularly disabled people with high support needs, need more help to stay in their homes than they are sometimes able to get.
Congressman Rush’s amendment would allow money that should go to supporting disabled people in the community go to neo-institutions like farmsteads and “intentional communities” instead. Over the last five years, significant conflict has existed between disability rights groups and a vocal minority of parents on the appropriateness of such settings, centering on how to define values like “choice” and “inclusion.”
Fortunately, disability activists leaped into action as soon as news of the amendment became known. Congressman Rush’s office was bombarded with calls to pull the amendment. During the hours long markup session, Congressman Rush ultimately did not bring his proposed amendment to the floor. NOS Magazine reached out to Congressman Rush’s office, but were unable to get a comment on why the amendment was withdrawn, or even why it was proposed in the first place.
Amber Smock, the Advocacy Director at Access Living, an Illinois disability rights organization, told NOS Magazine, “[Access Living] tried hard to communicate with [Congressman Rush’s] office. When we heard about the new amendment, we tried to reach out but the staff did not respond. We are definitely open to having a conversation with the Congressman going forward, and urge our friends in the disability community to talk with him and help him learn why the HCBS Settings Rule is so important.” She added, “after the months of difficult work put in by the disability community to save Medicaid, the surprise introduction of the amendment to weaken the HCBS Settings Rule felt like the rug was being pulled out from under us… Pro-institution opponents of the Settings Rule have spread a great deal of misinformation that the Rule diminishes the right to live in an institution. It does not. It merely ensures that Medicaid HCBS dollars go to actual [community living], not to institutions.”