The Roving Activist’s Blog

The Interim Final Rules issued by the Centers for Medicare and Medicaid Services
(CMS) will reduce federal case management reimbursement targeted for transitioning people from institutional settings to the community. Under the Interim Final Rules, CMS will reduce the funding for individuals transitioning from a nursing home or other institution to a community setting, from the current 180 days to only 60 days if the individual has been institutionalized for six months or more. CMS will only allow payment for 14 days if the individual has been institutionalized for less than six months. This change undercuts efforts at the state level to comply with the Olmstead decision, implement the Money Follows the Person Demonstration programs and support people transitioning into the community from institutional placement.

Let CMS know that you oppose this change!

Here is a sample letter that you can send by postal mail:

Dennis Smith, Director of the Center for Medicaid and State Operations

Department of Health and Human Services

Attention CMS-2237-IFC

P.O. Box 8016

Baltimore, MD 21244-8016

Re: Interim Final Rule on Case Management Services

Dear Mr. Smith:

I am an advocate for people with disabilities and am deeply concerned about and oppose Interim Final Rules issued by the Centers for Medicare and Medicaid Services (CMS) which will reduce federal case management reimbursement targeted for assistance transitioning individuals from an institutional setting to the community. Under the Interim Final Rules, CMS would reduce the funding for such an individual from the current 180 days to only 60 days if the individual has been institutionalized for six months or more. CMS would only allow payment for 14 days if the individual has been institutionalized for less than six months.

CMS staff stated that the rationale for this change, in part, is that payment for transition case management is a duplication of payment to the institution which is expected to provide “discharge planning”. I strongly disagree with this assertion. Transition into the community requires a great deal of work to coordinate the services and supports individuals need to be successful. As an advocate for people with disabilities, I know that institution-based staff is unfamiliar with the complex array of community-based housing options, services, and supports that must be navigated to transition into community living. This work is particularly difficult and time-consuming because the entire plan must be in place at the same time. It is impossible to effectively put one component of a plan in place and then work on another piece.

CMS originally changed these case management rules and increased the allowable payment to address concerns that people needed additional support beyond institutional discharge planning to transition to community living. This change was made to help states comply with the Olmstead decision. Reversing this position simply strengthens the institutional bias and undercuts state transition efforts. The timing on this change is particularly devastating because states are beginning to implement their Money Follows the Person Demonstration programs. Advocates have been working with the states to use the expanded case management funding to support the work needed to make community living a viable alternative. More importantly, this funding stream would help transition people into the community long after the demonstration program is over.

I am also concerned that the payment system creates a huge disincentive for smaller non-profit organizations to do this work. Payment is made only after the individual has transitioned to the community. Smaller non-profit organizations, which have been the leaders in transitioning people out of nursing facilities, often do not have sufficient cash flow to support the work while they wait months for payment. I urge CMS to work with advocates to develop an approach which maintains accountability for the work but also addresses this concern.

Again, I urge you to retract these devastating changes.

Sincerely,

If you want things a little easier, click on the Take Action link to reach the sample letter to Dennis Smith. Please feel free to personalize the letter to reflect your own experiences. Enter your contact information, then, click Submit.

If your screen reader does not work with the capwiz system, you can e-mail your letter to: dennis.smith@cms.hhs.gov

I just found out about this…

Voice of the Retarded (VOR), has set it’s sights on Money Follows the Person (MFP) and is trying to destroy the states’ demonstration efforts.

They will be getting on the next CMS Stakeholders Call en mass.  Supporters of MFP need to get on this stakeholders call (it’s free) and support MFP and choice for people who want out to be able to get out of nursing homes or other insitutions.

The call is on January 17th at 3:00 to 4:30 pm EASTERN TIME (2 pm Central, 1 pm Mountain, 12 pm Pacific)

The call in number is  888-793-1765  and the passcode is “stakeholders“

Here is a very important Action Alert from Chris:

ACTION ALERT – NYS Budget Hearing in Rochester – Speak Out for Disability Rights!

We have just learned that NYS will hold one of its Budget Hearings in Rochester on November 17, 2007.  The hearing will be held at University of Rochester Kornberg Medical Research Building, 415 Elmwood Avenue, Rochester, New York 14642 from 3:00 – 6:00 PM. 

It is critical that we have a good showing!

Governor Spitzer is talking about a multi-billion dollar deficit and the need to make cuts in vital programs like Medicaid.  We need him to know that community-based services, controlled by the individual getting services, are the way to go!  The state can save money by ending its dependence on nursing homes and institutions for seniors and people with disabilities!

Also, very important for the Greater Rochester Region, the State Education Department, for the first time ever, has requested state funding for the Center for Disability Rights!  Many of you have helped us in the past as we advocated for state funding to better serve people with disabilities in Monroe and the surrounding counties – we’re finally seeing progress.  WE NEED THE GOVERNOR TO HEAR THAT STATE FUNDING FOR CDR IS A PRIORITY!

And as we all know, there is not enough affordable, accessible, integrated housing for people with disabilities.  In 2007, Governor Spitzer’s budget created a rental subsidy for people leaving nursing facilities.  This needs to be continued and expanded to create more housing opportunities for all people with disabilities.

Please contact Anita Cameron at (585) 546-7510 or acameron@rochestercdr.org if you can attend and if you would like to speak.  We need as MANY PEOPLE as possible to attend and a good handful to speak!  For more information on the hearing, go here.

Saturday, November 17, 2007

3:00 PM – 6:00 PM

U of R, Kornberg Medical Research Building

415 Elmwood Avenue

I really hope to see many of you there!  Helping people with disabilities get the services and housing they need sounds like a great way to spend a Saturday!

FREE OUR PEOPLE!

Chris Hilderbrant

Director of Advocacy

Center for Disability Rights

RA’s note:

Of course, I will be at the hearing, and am slated to testify on behalf of ADAPT. I will post my testimony once it is written.

Today started a tad different. I was one of the folks doing some covert ops, so I covered up my ADAPT gear, doffed my red flag, and took off a few minutes earlier with David, from Texas. We took the scenic route around, but wound up running into a couple of cops, who kept advising us to join the protest. We told the cops that we were doing the tourist thing today, and hoped that they believed us, which I doubted. We met Mike, from Kansas behind the Staples, and off we went on a route out of Hades, dodging cops. we got to the State of Illinois Building, also called the Jim Thompson Building, a bit early. Being a native Chicagoan, I have vivid memories of watching this building go up, and those memories are joined by memories of the last time that ADAPT was here back in 1992.

David and I go buy a sandwich and a drick at the sandwich shop, then, I wander into the Sweet Shop to get some gourmet jelly beans, then, we both wander into Wolf Camera, where David quizzes the lady behind the counter about camera film and batteries. The lady knows her stuff. As it happens, Wolf Camera is right by the doors, and we slowly sidle near them, waiting for the signal.

Suddenly, a whistle blows, and all hell breaks loose. David and I immediately catch a door, and block it open so that everyone can get in. The ADAPT Bum rush on the building happens so fast that within a couple of minutes, everyone is in, blocking escalators, doors, elevators, even the CTA train station gates! A couple of Chicago folks do make it to the 14th floor, where the governor’s office is, and we settle down for what we know will be a long day.

Wanting to be flexible in my movements, I move form place to place, wherever I am needed. At first, I’m at an escalator, then, I find myself at one of the CTA El stop stations. I pass out flyers, and explaint to people who we are, and why were are here. I ask people to call the Governor, and ask that he not open any more institutions. Governor Blagojevich seems bent on opening the Lincoln Developmental Center, a state “school” (read institution) for people with developmental delays. Shamefully, Illinois ranks 45 out of 50 in home health and community-based services for people with disabilities. All of the people that I speak to are very supportive. I only encounter one person with a bad attitude so far.

I feel a sense of deja vu as once again, I run into someone out of my past. The last time, it was an old boyfriend from back in the days when I was trying to please my family, not knowing that they already guessed that I was a Lesbian, and had no problems with it. Alonzo was my last boyfriend, and when I left Chicago, I thought I’d seen the last of him. Imagine my surprise when, during the action in this very building, on this very floor back in 1992, I heard someone call my name, and ask me to let him get upstairs so that he could get his state ID. I recognized Alonzo, then, took mass pleasure in telling him NO, and directing him to get a flyer and read it. He couldn’t believe that I was with ADAPT! He told me that he was proud of me, then, soon left.

This time, while handing out flyers, I heard a voice behind me say, “I have firsthand knowledge of this because my mother is in a nursing home.” The guy came up and began talking. I recognized his voice, and his blur, and asked him his name. He said, “Harry.” It was none other than my old colleague, Harry Brooks, with whom I worked with at CTA back in the days when we were both Transit Information Agents. I was a young thing of 19, then, and working my way through college, since the scholarship that I’d gotten was nowhere near enough to pay the bills. We shared some memories, I gave Harry a flyer, and he was on his way.

After passing out flyers, I go around chanting and singing, trying to keep folks pumped up. Johnny sings some songs, some of which are new. There is ADAPT police tape and cut-outs of the governor, and Abe Lincoln everywhere. Time is getting on, so we bump it up. We take over both CTA gates. At first, the police and transit cops try to stop us, but we are relentless. I did the ADAPT fling out of my chair, joining others on the floor to help block the gates so that no one could come or go. We explain to folks that though they may be inconvenienced for a few hours, people were dying in nursing homes and other institutions. One lady starts freaking, and trying to push her way through. I end up being stepped on by her, and a transit cop. That lady was the last person to get through our line. When the transit cops and others knew that they couldn’t outlast or outmanuver us, they gave it up, shut down the station, and left. When by 5:00 we still had not heard anything, we bumped it up some more, and got through the abandoned gates, and blocked the last door to the CTA station, as well as the stairs and escalators beyond the gates. Now, no one truely was going nowhere!

Once the CTA station was truely shut down, and the action began to affect CTA, itself, it seemed that those slowpoke governor’s folks began to realize that ADAPT meant business, they came around quickly, and we got three great victories:

1. The Governor’s office committed to close Lincoln Developmental Center PERMANENTLY!

2. Rahnee Patrick and other Chicago ADAPT members would be at the table when the state sets up the Illinois Money Follows The Person Project, and will help in its direction.

3. Governor Blagojevich will meet with ADAPT before October 17, 2007.

Here is a link to the article in the Chicago Tribune:

http://www.chicagotribune.com/news/local/chi-0911adapt_websep12,1,7988613.story

Here is some good news…

Secretary Jackson issues follow up MFP letter to PHAs

On July 9th, HUD Secretary Jackson issued a follow up letter on MFP and the Housing Authorities.  Below is a link to get a pdf  copy.  Among other things, the Secretary encourages the PHA Executive Directors to work with CILs, P&As, community and advocacy groups that work with people with disabilities.  In addition his letter asks the Directors to write to HUD, by August 31st, with details about how they are implementing the MFP Rebalancing Initiative

Here is the link to the full letter.

http://www.hud.gov/offices/fheo/disabilities/MFP-RebalancingMemo.PDF. 

Please feel free to share his letter with your colleagues and partners.

ADAPT also had a successful meeting with HUD and Rep. Barney Frank, and Rep. Maxine Waters!

States Without Money Follow the Person Awards

Three States applied and were rejected by CMS - Mississippi, Rhode
Island and Tennessee.

Four States, Florida, Idaho, West Virginia and New Mexico,
initially applied for a MFP grant in the first tier of
applications, were rejected (as were many States) and then did not
reapply for the second tier MFP awards.

People in nursing homes who want to live in the community

Alabama 3,651
Alaska 172
Arizona 3,188
Colorado 3,741
Florida 19,206
Idaho 1,156
Maine 1,550
Massachussetts 8,982
Minnesota 6,519
Mississippi 1,737
Montana 1,307
Nevada 1,344
New Mexico 1,675 [has a state MFP program]
Rhode Island 1,546
South Dakota 1,053
Tennessee 7,068
Utah 1,776
Vermont 711
West Virginia 1,965
Wyoming 537

CMS AWARDS GRANTS TO 13 STATES
FOR ALTERNATIVES TO NURSING HOME CARE

Thirteen states and the District of Columbia will get more than $547
million in grants over five years to build Medicaid long-term care
programs that will help keep people at home and out of institutions,
Leslie V. Norwalk, Acting Administrator of the Centers for Medicare and
Medicaid Services (CMS) announced today. 

Today’s awards are the second round of grants that will total  $1.75 billion over five years (2007-2011) to help shift Medicaid’s traditional emphasis on institutional care to a system offering greater choices that include home and community-based services. 

This “Money Follows the Person” initiative was included in the Deficit Reduction Act of 2005 (DRA), currently being implemented by CMS. It is a component of the administration’s New Freedom Initiative, a nationwide effort to remove barriers to community living for people of all ages with disabilities or chronic illnesses.

“There is more evidence than ever that people who need long-term care prefer to remain in their own homes and communities whenever possible,” said Ms. Norwalk. ”This new program will help states shift Medicaid’s traditional emphasis on institutional care to a system offering greater choices that include home-based services.

“States will also benefit by giving the elderly and people with disabilities more control over how and where they receive the Medicaid services they need.”

States expect to be able to move more than 14,000 people into community settings using these grant awards.

The Medicaid program traditionally pays for care for elderly and disabled individuals living in institutions who need help with activities of daily living. To fund home and community-based services, states must obtain waivers of normal program rules designed to pay for
care in institutions. 

“The concept of money following the person to the most appropriate setting improves beneficiary satisfaction while reducing Medicaid costs,” Ms. Norwalk said.  “We intend to keep taking steps to remove barriers and rebalance the options for Medicaid-funded long-term care.” States receiving grants today (see list below) will design programs with four major objectives:

*         Increase the use of home and community-based, rather than institutional, long-term care services;

*         Eliminate barriers or mechanisms that prevent Medicaid-eligible individuals from receiving support for appropriate and necessary long-term services in the settings of their choice;

*         Increase the ability of the state Medicaid program to assure continued provision of home and community based long-term care services to eligible individuals who choose to move from an institutional to a community setting; and

*         Ensure that procedures are in place to provide quality assurance for individuals receiving Medicaid home and community-based long-term care services and to provide for continuous quality improvement in such services. 

All states were eligible to participate in the five-year demonstration program and had to commit to provide demonstration services for at least two years.  

States receiving grant funds will qualify for a higher percentage of federal matching dollars to help cover the costs of moving people out of nursing homes and into community settings. The higher matching rate will be paid for one year after an individual moves out of an institution and into the community. The state must continue to provide community
services after that period as long as the person needs community services and is Medicaid eligible.

“These demonstration grants are a clear sign of our continued commitment to expand choice to all Medicaid beneficiaries as well as allowing them the independence to live at home and contribute to their communities,” said Ms. Norwalk.

For more details about the New Freedom Initiative, of which this demonstration is part, visit the CMS web site at:

http://www.cms.hhs.gov/newfreedom/. 

2007 MONEY FOLLOWS THE PERSON
REBALANCING DEMONSTRATION AWARDS

Award

State:
Transitions: 
Year One Award Amount:  
Five Year  Commitment:
     

Delaware

100
$132,537
$5,372,007
     
District of Columbia

1110
$2,546,569
$26,377,620
     
Georgia

1,347
$480,193
$34,091,671
     
Hawaii

415
$231,250
$10,263,736
     
Illinois

3,357
$6,879,166
$55,703,078
     
Kansas

934
$102,483
$36,787,453
     
Kentucky

431
$4,973,118
$49,831,580
     
Louisiana

760
$524,000
$30,963,664

New Jersey

590
$230,000
$30,300,000
     
North Carolina

552
$16,055
$16,897,391
     
North Dakota

110
$18,089
$8,945,209
     
Oregon

780
$80,785
$114,727,864 
     
Pennsylvania

2600
$130,609
$98,196,439
     
Virginia

1041
$13,793
$28,626,136
     
Totals

14127
$16,358,647
$547,083,848

Here are some cool little MFP payout facts…

Texas, California, Ohio, and New York will be getting the most MFP grant money.

States               5 year total           2007 amount
                         
Texas          $142,700,353            $143,401

California    $130,387,500            $90,000

Ohio            $100,645,125            $2,079,488

New York    $82,636,864              $192,981

Here is the breakdown of the people New York will be serving via the MFP grants. The main foucus will be on getting folks out of nursing homes and other institutions and getting them affordable, accesible, integrated housing.

Nursing Home Trans./Diversions 2800                                                                              

Elderly — 1190 

MR/DD — 140 

PD — 1190

MI — 280  

Duals — 0 
          
As you can see, in five years, we plan to free 5,600 people…1,120 folks a year!

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.