Memo to the World

Are public funds to be used for nursing homes or for paying personal assistants in one's own home? Missouri opened the way to freedom. Internet publication URL:
June 28, 2000 -- Jefferson City, Missouri

Memo To: The World
From: Candace Hawkins

It happened, and I was there. At 10:45 am on June 28, 2000, Governor Mel Carnahan signed eleven state appropriation bills for fiscal year 2001's $17 billion budget. Buried in the bills directing funding for highways and prisons, schools and bridges, state parks and economic development was the emancipation proclamation we had been working for -- a passport to freedom for people whose long-term care services are funded by Medicaid. House Bill 1111, thanks to the work of Rep. Quincy Troupe and Senator Joe Maxwell, contained language allowing consumer choice in the use of the long-term care dollars.

Here are those amazing "follow the person" words: "Provided that an individual eligible for or receiving nursing home care must be given the opportunity to have those Medicaid dollars follow them to the community and choose the personal care option in the community that best meets the individual's needs. This includes the Consumer Directed Medicaid State Plan Amendment that is administered by the Department of Vocational Rehabilitation and the Department of Education. It further provides that individuals eligible for the Medicaid Personal Care Option must be allowed to choose, from among all the options, that option which best meets their need; and also be allowed to have their Medicaid funds follow them to whichever option they choose."

[The follow-the-person language does not apply only to people forced to live in nursing homes. It's for everyone recieving the Medicaid long-term care funding.]

Missouri is the first -- but not by any means the last -- to emancipate all of its citizens with disabilities.

Few of the 150 people crammed -- standing room only -- into the Governor's oval office understood the importance of that last bill. Kay Arnold did. Early at 4:30 am that day, weary workers at Kay's nursing home struggled with the change in their routine. They were busy getting the 50-something-year-old woman ready to catch the 5:30 a.m. bus to Jefferson City - -she was going to see the Governor. Kay would attend the 9 a.m. bill signing.

There were speeches aplenty as the governor signed bills in numerical order. HB 1101 - Public Debt. HB 1102 - Elementary and Secondary Education. HB 1103 - Higher Education. One by one, state departments received the okay and their marching orders for FY 2001 spending. The budget bills were being signed just in the nick of time, with the new state year starting on July 1. Speech-giver after speech-giver thanked the Governor for his leadership as he signed his final budget.

Finally HB 1111 - Social Services, the very lowest priority in MO government spending -- services for the poor, elderly and children without health insurance, Medicaid, child support enforcement, and that much maligned "old" idea, welfare -- was up for signature. Kay Arnold's physical therapist raced to push her chair through the crowd to the edge of the table. Kay would sit beside the Governor for the signing. After all the politicians and state department folks did their speechifying, Kay jumped in. Her soft voice was so low that the governor asked her to repeat her words.

"Thank you Governor," she said. "Now I can go home."

Most bureaucrats and cynical staffers in the room, so wise and all-knowing, were sure she meant that now she could get out of that crowded room. One mumbled under his breath, "Yeah, we can all leave." But as Governor Carnahan leaned over and asked to hear Kay repeat her thanks, I do believe he at least got it. As she spoke those words again, it was magic -- one of those crystal-clear moments I'll always remember. The thirty-five advocates in the room, and the governor himself, could taste freedom in the air.

A moment later, Governor Carnahan handed Kay a signed copy of the bill with his signature pen. To most, this was only a nice souvenir of an everyday occasion in Missouri's capital. But that bill held the keys to Kay's own freedom. She knew that now she would be going to HER home, a real home, at last.

We hope, and we will work to see, more states follow Missouri into Olmstead territory. There are, today, 53,576 more Americans, once imprisoned for the crime of having a disability, who are now free to choose where they live. These formerly disposable Americans will take their rightful place in our land. And Kay Arnold will be among them. Welcome to freedom, all of you. With you by our sides, we will at last make America's promise of freedom come true for us all, coast to coast.