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Kristin Murphy, Deseret News
Jerry Costley, right, talks to the media as members of the Disabled Rights Action Committee gather outside of the Wallace F. Bennett Federal Building in Salt Lake City on Tuesday, March 21, 2017, to protest the elimination of Medicaid and Affordable Care Act protections.

SALT LAKE CITY — The repeal of Obamacare and its proposed replacement — the American Health Care Act — would have dire consequences for people with disabilities, said advocates who rallied outside the Wallace F. Bennett Federal Building Tuesday afternoon.

"The thing we're most concerned about if they get rid of the Affordable Care Act and replace it with things that don't have the protections ACA has, we'll be hurt," said Jerry Costley, executive director of the nonprofiit Disabled Rights Action Committee.

One of the organization's greatest concerns is that the Obamacare replacement won't have the same protections for people who have pre-existing conditions, which all people with disabilities have, Costley said.

Proposals suggest there may be less coverage, higher premiums and no guarantees of continuous coverage, he said.

Lopeti Penima'ani, chairman of Disabled Rights Action Committee's board of directors, said he is particularly troubled "by the lack of concern for people with disabilities" in what appears to be a fast-track process to repeal ACA and replace it with an alternative proposed by the Trump administration.

"We stand to lose a lot of the things that enable people with disabilities to live in their own homes and communities, support services such as home care attendant services or Meals on Wheels," Penima'ani said.

Disability advocate Barbara Toomer, who has long fought for people with disabilities to live in their communities in the least restrictive environment, said the American Health Care Act, as proposed, would have far-reaching effects.

"If his health care act passes, it will impact everybody. Ninety-five percent of us become disabled before we die, 95 percent. Every person in a nursing home has a disability. They wouldn't be there if they didn't have a disability," she said.

The health care act proposed by the Trump administration makes no mention of the Community First Choice Option, which is embedded in ACA, she said.

Toomer lives in her own home and receives help from home health care providers. Without them, "I could not be here today," she said.

If she had to live in a nursing home, the cost of her care would be higher and she would have to abide by the care center's routine and menus.

"I'm free. If want to have popcorn for breakfast, lunch and dinner, I can have it," she said.

Costley said another concern is the possibility of Medicaid block grants, which over time could result in "significant cuts in Medicaid funding to states" and authority to cut services and supports.

"This risks throwing us back to the Dark Ages where people with disabilities were warehoused in horrific conditions," he said.

Leslie Gertsch, who is visually impaired, said she also worries about the future of Medicare and supplemental plans if Obamacare is repealed.

"Everything I've been reading says there will be more costs to seniors. We're already on fixed incomes and where's it going to come from?" she said.

"A good percentage of the blind and vision impaired are on Medicaid or are seniors on Medicare. So it's really going to affect our population if care drops and costs increase. A lot of my people are on low fixed incomes living on about $735 a month. so I don't see how higher copays and things like that are going to work."

After a press conference and demonstration outside the federal building, a small delegation was invited in the building to discuss their concerns with Utah-based congressional staffers.

Costley said while the American Health Care Act has been rolled out, there is still time for Utah's congressional delegation to slow down the deliberations given all that is at stake.

Sen. Mike Lee, R-Utah, appears to be willing to slow down the effort, but in a statement released late Tuesday, Lee said he remains committed to repealing Obamacare.

"The American Health Care Act fails to both repeal Obamacare and replace it with an alternative that lowers costs. Additionally, its reforms to Medicaid fail to either incentivize state innovation or place the program on a financially stable path. I am a no," Lee said in a statement issued following his review of the latest version of the House bill.

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Lee said "there is a lot of miscommunication out there about what can be done under the Senate's Byrd Rule," referring to a rule that allows any senator to raise a point of order against a bill or amendment to a bill on the grounds it is “extraneous” to the bill’s purpose of making budgetary changes.

"I recently discussed ideas and proposals with the Senate parliamentarian and she has not yet ruled on whether Obamacare's regulations may or may not be repealed in the reconcilliation process. It is also unclear where any of the life protections in the House bill will make it through the process.

"All of this suggests we should slow down this effort to get replace right."