The Roving Activist’s Blog

On January 11, 2007, CMS announced the 17 States that were awarded “first
round” Money Follows the Person (MFP) grants. Congratulations!

CMS stated that “for too long people had to follow the money,” and now
Medicaid money can follow the people. These 17 MFP awardees are expected to
“reinvest the savings [from the institutions] into community-based services” and to
have “annual rebalancing benchmarks.” 

These 17 States will receive more than $23 million in FY 07 and will be
eligible for more than $900 million federal dollars over the next 5 years. These
funds will help 25,000 disabled and elderly persons leave institutions, return
to the community, and receive appropriate Medicaid funded services in their
own homes. CMS emphasized that the winning States addressed a broad range of
people with disabilities, people with “complex needs,” people with developmental
disabilities, elderly persons, persons with dual diagnoses and others.

CMS stated that the MFP grants will help States  “level the playing field by
eliminating barriers in the community” and “expand choice” for persons who
want to live in the community.

CMS publicly recognized ADAPT’s and NCIL’s extraordinary hard work in both
convincing Congress to allocate the $1.75 billion for MFP and in urging and
working with States during the application process.

Now the work really begins in those 17 States. Over the next 12 months, you
and your State must flesh out “Operational Protocols” answering how the
program will be implemented. Disability and elderly advocates have the expertise in
transitioning persons from institutions to the community. You know the real
problems people will face. Get to the table.

The 17 winning States are: WI, NY, WA, CN, MI, OKL, ARK,  MARYLAND, NEB, N.
HAMPSHIRE, CA, IND, TX, S. CAR, IOWA, OH, MISSOURI. 

WHAT ABOUT THE OTHER STATES?

Another 21 States applied for MFP but, according to CMS, need to “refine
their application” with “more specificity.”  As far as we can tell, as a
general matter, CMS correctly did not award these 21 States a first round grant
because CMS wants (a) more details on how these 21States will “rebalance” their
institutional versus community Medicaid expenditures/services and (b) more
specific benchmarks regarding the numbers of persons who will be transitioned out
of the institutions. 

– From Steve Gold’s site

Capitol Area ADAPT pulled off a regional action yesterday at the annual meeting of the National Association of State Medicaid Directors. My friend, Bobby Coward, wrote his take on the action, and sent it to me with his permission to post it here. I’ve made a couple of edits for punctuation and spelling errors.

Greetings all!

On Tuesday November 14, 2006, Capitol Area ADAPT, Delaware ADAPT, Maryland ADAPT and Northern Virginia Disability Advocates (NOVADA) joined forces to act at the Nation Association of State Medicaid Directors 2006 Annual Meeting held at the Crystal Gateway Marriott Hotel located in Crystal City, Arlington, Virginia.

A group of 25 ADAPT members converged on the NASMD meeting to achieve our objective, which was to disturbed flyers addressing MFP and community involvement as well as demand a meeting with the NASMD. Our mission goal was completed with the highest level of success.

As the group entered the Gateway Marriott, we began passing out flyers and speaking about the need for community based services for individuals with disabilities and how MFP implements that need. We passed out over 300 flyers as we sought to sit in on the workshops to gain the attention of Chairperson Nancy Atkin, Commissioner, Bureau for Medical Services Department of Health and Human Resources, and Martha Roherty, Director, NASMD. We entered the conference room and passed out flyers to everyone in the room as we moved to position ourselves at the very front of the room. As we reached the front, Matt Barkley started passing our flyers to the panel presenters while their presentations were in progress. This act drew focused attention to ADAPT’s presence. One presenter tossed the flyer back at Matt in outrage.

As the workshops drew to an end, Gwen Gillenwater, formerly with NCIL and AAPD, and a strong supporter of National ADAPT, informed ADAPT that Nancy Atkin already left the meeting after a brief conversation with her. So ADAPT began the hunt for Martha Roherty. We found out there was a meeting agenda change and Martha Roherty wasn’t moderating the scheduled workshop that we were attending. ADAPT began stalking all conference rooms and staff inquiring about were was Martha Roherty. Our action became a very major concern to meeting participants and disruptive to the NASMD Annual meeting.

Word got out that ADAPT wouldn’t stop disrupting until Martha met with us. Mrs. Martha Roherty appeared without warning in the presence of ADAPT. ADAPT made our request to meet with NASMD before the end of ‘06. Mrs Roherty agreed. Editor’s note — It looks like that meeting may happen in the first week of December.

ADAPT then sought to sit in on plenary session in which former Secretary of HHS Tommy Thompson was featured speaker.

As ADAPT began to move to the ballroom where the plenary session was to be held, NASMD staff informed us that since we didn’t pay to attend the meeting, we couldn’t go in. ADAPT completely disregarded NASMD staff and entered the ballroom; we told NASMD staff to call the police to stop us. Once we were in the ballroom, NASMD staff knew we were focused on entry, so they said it was OK for us to attend, but ADAPT would have to stay in the back of the ballroom. ADAPT responded that we will sit up front near the platform stage, which we did. ADAPT waited for Tommy Thompson to arrive and when he arrived, he greeted ADAPT with a heartfelt welcome and acknowledged National ADAPT for their voice and role in community base living efforts for the disabled and MFP, and encouraged NASMD to work with ADAPT and community organizations.

I WOULD LIKE TO TRIBUTE OUR SUCCESSFUL ACTION TO ANITA CAMERON

Anita is leaving Capitol Area ADAPT

bobby c.

Thanks, Bobby, for the article, and the tribute. I am honored, but, as you probably know, embarassed, but you know how I am. As Bobby stated above, I am leaving Capitol Area ADAPT to take a job in Rochester, NY, so I’ll be with Rochester ADAPT. I’ll be leaving on Saturday, and can’t wait to get up there and get to work. The Rochester folks are ecstatic as well. With that in mind, there was no way that I could leave without going to a final action in DC. To be honest, I enjoyed working with the community, and will miss everyone here. I hope that I will be as successful, and even more so, in Rochester.

At 12:45 EST, I received a call from Colorado ADAPT members regarding the hearings before the state Medicaid Services Board. The disabilty community had been invited totestify before this board regarding home health issues. Foremost on the minds of Colorado ADAPT members was the decision by HCPF Director Steve Tool not to apply for the MFP grant from the Centers for Medicaid/Medicare Services (CMS). These grants would allow more people with disabilities and seniors living in institutions to transition into the community. Eligible states that receive the grants would get the funds via a federal match on varying levels. Colorado’s match would be 75 cents for every dollar spent on community-based services, one of the higher matches among the states. That is, if Colorado applied.

Apparently, Steve Tool, and certain members of the Medicaid Services Board got tired of the MFP-related questions posed during the testimonies because the hearing was abruptly terminated, citing the Board’s inability (or perhaps, unwillingness) to answer the questions. That was not a smart decision, as ADAPT members quickly took over the meeting room, and have now blocked all of the doors. This has been going on for about an hour. I will keep you abreast of the happenings as I am updated by ADAPT.

In the interest of full disclosure, I must report that one of the ADAPTers blocking doors is my mum, Alice Bozeman. She was one of those slated to testify before the Board, and intended to share the story of my Popz, Rick Bozeman. She is no stranger to local ADAPT actions, and was arrested during one action a couple of years ago. Obviously, I am very proud of her!

Colorado disability activists who had been awaiting the decision of their state to apply for the Money Follows the Person (MFP) grant offered by the Centers for Medicaid/Medicare Services (CMS) had their hopes dashed on Wednesday when Health Care Policy and Financing (HCPF) Director, Steve Tool called to say that he would not be applying on behalf of the state for the grant. 

Activists are aghast at the decision, which, according to Tool, is because of his belief that Colorado has a slim chance of getting the grant. He feels that because Colorado already utilizes its budget in an MFP-like fashion, and has a very successful Transition Services benefit provided for in its Elderly, Blind, and Disabled (EBD) Waiver, that CMS will not see fit to award the state any money.

Disability activists strongly disagree with Tool, and feel that he should have gone ahead and applied for the grant, as, according to CMS, Colorado is eligble to apply. Members of Colorado ADAPT, who led the effort to get the state to apply for the MFP grant, and who had been trying to work with Mr. Tool, and HCPF for several months, even offered to write the grant themselves, but the offer was declined. The deadline for states to submit their grant applications to CMS is November 1st.

Colorado ADAPT, along with several other disability groups will testify at a hearing this morning before the state Medicaid Services Board. They will try once more to persuade mr. Tool to apply for the grant, but if he doesn’t, Colorado ADAPT will demand his resignation.

This issue is close to my heart, as I helped to write the letter that Colorado ADAPT sent to Steve Tool back in August, and went with them to deliver the letter (I happened to be in Colorado for my dad’s memorial service), and was there when Colorado ADAPT participated in a conference call with CMS when Mr. Tool refused to do so. When states like Tennessee and Mississippi, two of the states with the worst record for home and community-based services for people with disabilities and seniors will apply for MFP, while Colorado won’t — that is shamful! Even the District of Columbia, another place with dismal disability services is applying for the grant. The excuses that HCPF is spouting is farcical in light of the fact that Texas, a state that also utilizes its budget in an MFP-like fashion, has already stated its intention to apply for the grant.

I will keep you posted on what happens with this fight. I have a feeling that there are going to be some mighty fireworks at the hearing…

HUD Secretary Alphonso Jackson  has written to all the PHA Executive
Directors asking them to support their state’s Money Follows the Person
efforts. Here is the link to the letter:

http://www.hud.gov/offices/pih/publications/medicareinitiative.pdf

This is a direct result of the ADAPT action at HUD back in September. Thanks to the Secretary for honoring his promises, and thanks especially to ADAPT activists for their hard work!

The folks from West Virginia ADAPT sent this. Great work!!

Hi everyone:  WOW, what a great day. As usual the wheels of government turn very oddly. It seemed that the Governor was not going to make an announcement one way or the other yesteday. During the two hours the group of twenty people waited in his reception area, he sent out a minor staff person twice to basically say he didn’t know what was going on.

Finally at 3pm we were all suprised when the Governor himself came out of his office to welcome us.  The bottom line is that because of the pressure from the grassroots, the Governor seems to have decided that the grant is worth pursuing.  Following is the “official” synopsis of the meeting. Please feel free to send it to any and all newspapers in your area. 

Scott  
 
On Tuesday, October 3, twenty citizen advocates met at the State Capitol and marched to Governor Manchin’s reception area carrying signs congratulating the Governor for moving forward with pursuing the Federal Money Follows The Person Rebalancing Initiative grant, and signs that read ”Nothing About Us Without Us” and “Our Voices Will Be Heard”.  The group waited for two hours before the Governor finally came out and requested that he meet privately with two representatives of the group. Ken Ervin of ADAPT/WV, Scott Miller of PAIRS and Josh Miller, Self-Advocate Ambassador for MSPA were escorted in to the Governor’s private office.
 
The Governor made it clear that he wants to support all West Virginia citizens in the most equitable, efficient and effective ways possible. He met with the group for about thirty minutes and brought the State Olmstead Coordinator into the conversation by conference call. He told the Olmstead Coordinator to go ahead and start writing the grant application and assured her that Nancy Atkins, Commissioner of the Bureau of Medical Services, would offer whatever support she needed to get the application written.  He also assured the group that the Grants Management office was aware of the grant deadline and was prepared to move the grant through when it arrived in their office.  

The Governor stated that he would be talking with the Secretary of Health and Human Services, Michael Leavitt, to discuss the possibility of some flexibility in the administrative structure for West Virginia’s grant proposal so more of the funds could go directly to support individuals in the community. He did state that if West Virginia was not allowed that flexibility, he would still be willing to pursue the grant. He made it very clear that he is committed to the concept of Money Follows The Person and is working to be sure the State has all its “ducks in a row” before making the final decision about this grant. 

He accompanied this small group back to his reception area and briefly explained his position, shook everyone’s hand and said he would be making a formal announcement concerning the Money Follows The Person Rebalancing Initiative grant by Monday or Tuesday of next week at the latest.  

The group all felt like the trip to the Capitol was well worth the effort and that the Governor was sincere in his concern for people with disabilities in West Virginia. 
 

There is a ray of hope, and perhaps, a light at the end of the tunnel for Colorado ADAPT in the fight to get Health Care Policy and Financing director, Steve Tool, to allow Colorado to apply for the Money Follows the Person grant. As a direct result of the hard work of Colorado ADAPT, there will be a meeting on Thursday with Mr. Tool to discuss signing on. ADAPT members will propose writing the actual grant so that Tool will need to dedicate only one staffperson for the project. It will take lots of hard work to get the grant in by November 1st, but ADAPT has already done quite a bit of research, and have the actual grant writers in place. These folks have already gotten the framework for the grant down, which will save a lot of time. It only remains for Steve Tool to say yes, and the chances for that have gotten better, as it seems that his attitude has softened in the ensuing weeks due to the pressure from state legislators at the request of ADAPT. Hopefully, the meeting will have a positive outcome. I will keep you abreast of the happenings in this ongoing saga.

Wednesday, September 13

At 9 am, we began lining up in our assigned places. Soon we were off. I had to make the decision whether or not to get arrested if it comes to that. Normally, I would go in a heartbeat, but I had Candice with me, and I know that she didn’t want to be arrested. I decided to chill out this time, and stay back.

After a while, I noticed that we were in stealth mode again. Soon, we were streaming through the doors of the Capitol Hill Hilton. The various Managed Care Organizations (MCO’s) were having their convention here. With the government wanting more involvement of MCO’s in Medicaid, ADAPT wants them to respect the principles of independent living and consumer direction, and not try to make their money off of the backs of people with disabilities. Within minutes, the lobby was jam packed with hundreds of ADAPT folks yelling and chanting, “We are not your cash cows! Meet with ADAPT now!” We chanted, “Karen Ignagni, meet with ADAPT!” Karen Ignagni is the President and CEO of America’s Health Iinsurance Policy (AHIP), and her group, along with another were there. ADAPT wants Karen to write a national policy that would incorporate independent living, and consumer direction. 

I was amazed that we had managed to take over a hotel lobby two days in a row. I had memories of previous actions back in the day. I found myself near Babs and little Stephanie, who is now a teenager, and taller than I. To my left were Candice, Evan, and The Boys–brothers Eric and Andrew Roybal, from Denver. The Boys are 17 and 19, and it is their first action. They are rap artisits, and pretty good, too! There were several ADAPT folks dressed as cows, and everyone had a cool little cow mask. We rocked the Hilton so loud that they heard us on the second floor, where the meetings were being held. After a couple of hours, the negotiating team came down to annouce that Karen Ignagni would meet with us in 30 days. She was really interested in the things that ADAPT had to say, and the negotiators felt that the meeting was very positive.

Fresh from that victory, we then went over to the Rayburn Building where the Congressional Oversight Committee was having hearings on the Americans with Disabilities Act (ADA). About 100 or more of us stayed for the hearings, of which several important points were brought up, including the weakening of the definition of disability, and the impact that this has on people with certain disabilities such as epilepsy and diabetes.

Thursday, September 14

Thursday morning, cold and rainy, found us at HUD. That action brought back memories and flashbacks of earlier actions back in the day. HUD had been visited by ADAPT so many times that the police immediately took an ADAPT team upstairs to negotiate. We kept up the pressure downstairs with loud and rowdy chanting and singing in the rain. For a while the negotiations went bad, and the ADAPT team walked out, but not wanting to deal with several hundred angry ADAPTers, the Deputy Secretary of HUD brought the team back in, and began agreeing to the demands, one of which was to send out letters to all of the Public Housing Authorities supporting Access Across America, and earmarking Section 8 vouchers for people with disabilities transitioning from nursing homes and other institutions. She then came down and announced to ADAPT that the letter would go out before November 1.

We then headed over to the Republican National Committee Headquarters. ADAPT wants a meeting with Ken Mehlman, the Chair of the Committee. We want Mehlman to endorse MiCASSA, the Community Choice Act, and Money Follows the Person. So far, after several hits, we have never been able to get a meeting. Some of us managed to get into the building, while the rest of us shut it down tight! We blocked every entrance and sidewalk. I must say that along with the usual nasty remarks from angry Republicans, we did encounter some folks who truely wanted to know about MiCASSA.

The ADAPT gods, who’d been smiling upon us all week with successes, now smiled upon us again. We received notice through Mr. Jozefiak that Ken Mehlman has agreed to meet with ADAPT before the end of the year. This is amazing! The RNC has never before agreed to meet with ADAPT.

Friday, September 15

Dawn and I got up early today to listen to NPR. Joe Shapiro, a reporter for NPR who does stories on disability issues, and the author of Without Pity, a book about disability rights, has done a show about the collaboration between CMS administrator, Dr. Mark McClellan and ADAPT. The segment was very, very good, and brought back memories, as I was one of the ADAPT members out there blocking Pennsylvaina Ave., and who spoke with McClellan when he came out to meet with us. I swelled with pride when McClellan stated that his proudest achievement was working with ADAPT on MiCASSA and MFP.

ADAPT then prepared for its Day on the Hill. This is the day when we scour the Hill, visiting every Senator and Representative’s office, giving them information packets about MiCASSA, and thanking those that support it already. My group visited the offices of Sen. Dodd, Sen. Clinton, Sen. Bayh, Sen. Lott, and several other senators from Oklahoma, Georgia, Oregon, and Wisconsin. Rep. Bobby Rush, from Illinois, signed on to MiCASSA right there, and Sen John Kerry, a MiCASSA supporter took pictures with ADAPT activists. It is even possible that Sen. Ken Salazar, of Colorado might sign on. Dawn happened to be sitting directly behind him on the plane to DC, so she dashed off a two-page letter about the benefits of MiCASSA and Money Follows the Person, and how it can help Colorado. Sen. Salazar wrote Dawn back on his own stationary that he would check into both. He then had his staff call Dawn and invited her to a meeting that was already set up with Boulder ADAPT. Dawn says that the meeting went well.

Saturday, September 16

So ends a wonderful week of actions. I felt a twinge of sadness saying goodbye to everyone. This was a week of firsts for ADAPT, the most exciting for me being the involvement of so many youth. I noticed that kids who’d been born into ADAPT, or who’d come in very young were now growing up, and in their late teens, and early twenties. New ADAPT youth are coming in, and getting excited about standing up for themselves and others. I wish the young folks who are getting involved all the best, and I hope to see them around, and to eventually hand the baton of leadership over to them. Here’s what ADAPT had to say about the youth:

* ADAPT conducting its first Youth Summit, prior to the ADAPT Action, and having a general emphasis on youth throughout the week. Among the youth attending the action were disability rights filmmaker Eric Clow, from California; Candice Clark, from West Virginia, a member of the West Virginia Youth Disability Caucus that got legislation passed this year creating a Disability History Week in West Virginia; Eric and Andrew Roybal, brothers from Colorado who have written and recorded the first-ever disability rights rap song; Colin Olenick, a member of the Kansas Youth Leadership Network; Jamie, fresh out of a Georgia rehab facility; Sarah Watkins, a University of Michigan undergrad, who has spent most of 2006 researching the history and non-violent organizing strategies of ADAPT; Lisa Navarette of Texas; Paul Daye from Philadelphia; and Amber Smock of Chicago, one of the Youth Summit Organizers.

* The Kansas City Star newspaper following ADAPT youth Colin Olenick  from Overland Park, Kansas through the week.

http://www.kansascity.com/mld/kansascity/news/15531863.htm
(http://www.kansascity.com/mld/kansascity/news/15531863.htm)

Colin’s congressman, Rep. Dennis Moore (D-KS) has been a consistent and early co-sponsor of MiCASSA legislation. 

Lead on ADAPT Youth…Lead on!

Here is an email response from Gwyn Green, a member of the Colorado House of Representatives, regarding my Mum’s letter asking for support for MFP, as well as a request that the legislators encourage the state to apply for the MFP grants.

Dear Ms. Bozeman,

Thank you for writing of this worthy program, which I did not know even existed. I am a strong supporter of HCBS, and as you point out, we need the housing to go along with it.
It is incomprehensible to me that Mr. Tool would not be looking into this grant. 

It is really up to the governor to make sure the department heads he appoints do their job. The legislature cannot do so, although they can inquire, which I will. 

It is just so important that our new governor supports SOCIAL ISSUES such as good health care and independence.

Sincerely,
Gwyn Green

CMS has released the list of states that have expressed an interest in
applying for Money Follows the Person. 35 states and the District of
Columbia have shown their intent to apply.

This is NOT a list of states that have applied, they have said they are
intending to apply.  Applications are due November 1st.  If your state DID
express an interest you still want to make sure they DO apply, and if they
did NOT express an interest there is still time for them to do an actual
application — but they will need prodding RIGHT AWAY.

As of 9/15/06

States that DID express an interest in applying for MFP:

Arkansas

California

Connecticut

Delaware

District of Columbia

Florida

Georgia

Hawaii

Illinois

Indiana

Iowa

Kansas

Kentucky

Louisiana

Maine

Maryland

Michigan

Mississippi

Missouri

Montana

Nevada

New Hampshire

New Jersey

New Mexico

New York

North Carolina

North Dakota

Ohio

Oklahoma

Pennsylvania

Tennessee

Texas

Virginia

West Virginia

Wisconsin

Wyoming

States that did NOT express Interest in Applying for MFP:

Alabama

Alaska

Arizona

Colorado

Idaho

Massachusetts

Minnesota

Nebraska

Oregon

Rhode Island

South Carolina

South Dakota

Utah

Vermont

Washington