The power of ADAPT was on full display today at the as over 300 individuals with disabilities and their associates descended on the White House. We told stories about why Medicaid matters, how devastating any cuts will be to us, how Medicaid can save money while improving services and how frightened we are that wrong choices will be made that will cost us our freedom and in some cases our lives.
Barbara Toomer started off by noting that we have not received assurances that we have sought that Medicaid will be spared arbitrary and devastating cuts. While the administration has made vague promises to the media, Ms. Toomer pointed out that states have already made harmful cuts to Medicaid in attempts to balance their state budgets and that any cuts to the states would most likely be reflected in cuts to our services. Moreover, Ms. Toomer pointed out that ADAPT has proposed our own solutions for real Medicaid reform that will result in tremendous savings. Specifically, we are calling for expanding the use of community services, demedicalizing services, expanding consumer directed service options and reorganizing Medicaid services to eliminate wasteful bureaucracy.
Mike Oxford followed up noting that President Obama has asked for shared sacrifice and pointing out that we have already sacrificed much more than our share. Speaking of our experience in dealing with the states Mr. Oxford stated “We already know from experience it will end up hurting us anyway. That is why it’s important that the Obama administration meet with us.”
Pam Taggart asked President Obama to look out his window so we could talk with him. She then told that President that “We take medication and if we don’t get our medication we will die.” She followed up by asking President Obama “Do you care? Do you know what that means?”
Patricia Zeigler of New Mexico told of her fear for her mother who depends on in home services to maintain her independence. “I’m a proud woman with cerebral palsy and can’t quit my job and I can’t physically take care of her.”
Ian Engle informed us that “Medicaid Home and Community Based Services allow me to hire people to provide in-home services. These funds have been cut by 7% already. Any further cuts and people will have to go back into nursing homes. Let’s talk about what matters most–people or profits!”
Spitfire from Philadelphia declared “No one their right mind wants to be in a nursing home. I’ve been in one. Without my attendant and medication I would be dead, but I would rather die that be in a nursing home.”
Margaret Cana pointed out that “Medicaid matters to everyone who is on it.”
Martina Robinson from Massachusetts shared that “I take medication. Without my medication I would be dead. I have a job. I’m self employed. I voted for Obama. I matter. Medicaid matters.”
Julia added that Medicaid “keeps my chair working. It keeps me working and paying taxes. Please, please let us keep our Medicaid!”
Rhonda Loving of Austin Texas proclaimed that being on Medicaid “Isn’t a matter of choice. It’s matter of necessity. It’s a matter of life. It’s a matter of death. We are the people of the Unites States of America.”
Cathy Walker of Kansas reminded us that Medicaid is not just for people with permanent disabilities and that not everyone will require Medicaid for life. She told of her daughter, who developed cancer. In order for her daughter to receive needed treatment she had to go on Medicaid. Ms. Walker said the need to receive Medicaid funded treatment was devastating for her daughter, but it saved her daughter’s life, who is now a pediatrician who treats children with cancer.
Alice Bozeman said that the motto of the United States has become “Give us your tired masses yearning to be free, but no gimps!”
ADAPT on Capitol Hill Phillip Corona from Washington told of his son who be trapped in bed without home services. He reminded us that “disabilities can happen to anyone.”
John from Pennsylvania declared that “We all have a voice. Maybe this shows that we are one voice. We represent tens of thousands of people across the country. We are their testimony.”
The White House heard this voice; not only the testimonials, but the chants, the shouts and our sheer numbers. By the time the last testimony had ended Bruce Darling reported receiving a call from the White House staff. They reported that the cuts to Medicaid would not be as significant as we were first told and backed their statement up with specific figures they faxed over.
Equally important, they committed that the increased federal match for the Community First option would be preserved. This was critical to us, as this increase match was intended to entice otherwise recalcitrant states to end their institutional bias and place more cost effective community services on an equal entitlement playing field as nursing homes. This is an aspect of the Health Care Reform Act, but is optional for states to adopt. The White House was reported to be considering using the increased match promised for the Community First option to slightly increase the federal match across the board, but that talk ceased with the commitment we received today.
Later Mr. Darling was speaking with government policy experts who said they were unaware of this policy from the White House. Mr. Darling noted that maybe it was because the policy just changed this morning. Such is the power of ADAPT!