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

This came to me from Amber Smock, of Chicago ADAPT and FRIDA. Thanks Amber!

On Friday, January 18th, 2008, members of Michigan ADAPT struck back on the Ashley X issue at a huge lecture given by Dr. Douglas Diekema, the head of Seattle Children’s Institutional Review Board, which ok’d the treatment. Two of the organizers are past participants of the ADAPT Youth Summit—Theresa Squires and Shana Holet.
 
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On Friday, January 18th, 2008, after just 24 hours or so of frenzied planning (research, literature development, layout reconnaissance, trumpet calls to local troops, and alerting the media), the efforts of eight members of MI ADAPT culminated in a great and successful action in Grand Rapids, MI, at Calvin College’s the January Series lecture, entitled, “Love, Justice & Humility:  A Bioethicist Meets the PillowAngel.” Lansing ADAPT and Grand Rapids ADAPT joined forces (with encouragement from around the state) at the alma mater of Dr. Douglas Diekema, chair of the ethics review board at Seattle Children’s Hospital that approved what has become known as the “Ashley Treatment,” which stunted the growth of a child with mental and intellectual disabilities named Ashley in 2004.  In addition to the growth attenuation “therapy” from high doses of estrogen that fused her growth plates, thus stunting her growth, it was also decided for Ashley that she would receive a hysterectomy and have her breast buds removed, at 6 years of
age. These three procedures are often collectively referred to as the “Ashley Treatment” (a title that Diekema finds inappropriate and insensitive).

Although our group was small, we had barely a day’s notice of the event (two of our members were up until the wee hours of the morning copying flyers and settling final details), and the temperature was not even 20 degrees, we came on strong.  At a strategy meeting that morning, we decided that, because of our small numbers, our lack of time to do more in-depth planning, and given the fact that we were at a small, conservative college, our best approach would be to educate the public about the Disability Community’s perspective on the case. To do this, we would distribute flyers and ensure that we had a presence at both the lecture and the follow-up discussion.

As our caravan was unloading (contemplating changing our goal to getting this thing rescheduled to a warmer day), sharp-eyed but reasonably cordial Campus Security guards spotted our signs and made it clear that we would not be able to hang or tape signs anywhere or take them into the lecture hall with us, nor could we pass out literature indoors or in the walkway leading to the entrance of the building. This was a slight snag in that holding signs and passing out flyers in the frigid and windy weather would be rough, but in true ADAPT form we were not deterred!

In general, we were well received. In fact, two professors of Disability Studies (one with a significant physical disability), and a few other people, expressed how grateful they were for our presence and thanked us for “fighting the fight.”  With members at every entrance and two people in the main lecture hall (we had only planned on one going inside for the whole lecture, but the wheelchair-using professor of the Disability Studies
class–which is currently studying ADAPT, by the way!–became star struck when he found that he was actually talking to “the Weasel” and insisted that Weasel go in as his special guest), we distributed almost 600 flyers and had several good conversations with the public AND the media! (Apparently, a short blurb was on a regional Grand Rapids television station–Wood TV 8.)

As the crowd arriving died down, we all decided to watch the presentation in the overfill room. Dr. Diekema spoke on the medical facts of Ashley’s case and how the ethics committee came to its decision. We were surprised at how technically he spoke of Ashley and how he said nothing of the social implications of these procedures. At the conclusion, members of the audience had a short opportunity to ask questions of Dr. Diekema. We were fortunate that one of the two questions asked came from one of our members, Joe Stramondo, who challenged him to explain why Ashley’s parents and the
committee opted for such extreme, irreversible medical procedures rather than use personal care services, durable medical equipment (i.e. a hoyer lift) and other such supports. Dr. Diekema appeared a bit flustered at the suggestion that this decision was driven by social stigma and eventually had to admit that these other options were rejected merely because the parents did not want to use them.

Following the lecture was a guided discussion sponsored by CALL (Calvin Academy for Lifelong Learning) that was facilitated by Dr. Ronald Hofman, a pediatrician and friend of Diekema. The participants of this discussion included members of the medical community,
Dr. Diekema’s brother (who had a slight, visible physical disability), citizens who clearly fell on both sides of the issue, and two mothers of multiple children with significant disabilities, whom the facilitator had planted from among his own patients. Our members packed the back of the room. It was obvious by both the setup of the room and the initial direction of the “conversation” that they were not expecting us or our perspective. 
Hofman was clearly of the opinion that the team of bioethicists who signed off on all three of the elective procedures requested by Ashley’s parents (growth attenuation, uterus-removing hysterectomy, and breast bud removal), had NOT overstepped any moral line in the sand in terms of the autonomy, value, bodily integrity, and equality of the patient in her original, natural state. The comments of ADAPT and a couple of other people in the audience made clear that this line drawn by Ashley’s inherent rights as an 
individual human being (regardless of her doctors’ certainty that she would always remain the mentally functional equivalent of a 3-6 month old child), was the heart of the matter and the reason to hold such a conversation, rather than the emotion diffusing “how did it make you feel” questions and the “that’s a very reasonable reaction” responses. 

We did not allow the topic to be coddled or the audience to be lulled to sleep. We were the voice of reason that encouraged others to express their doubt. We know this to be true because we were told so afterward by those very people. To the facilitator’s credit, he rode the wave we created quite well, calling on the “folks in the back of the room” as readily as anyone else in the audience, though this was surely to retain decorum and control, certain that we would make our points whether called on or not. About that he was right, and with good reason because our points were good.

ADAPT’s perspective on the issue is right, true and clear: Ashley X is a real person and denying her the right to be all that she can be (even in the name of providing love and care) is wrong! These operations were elective, in no case alleviating any certain discomfort of Ashley’s.  Numerous alternatives existed and were rejected for non-medical reasons. Ashley would live with the decisions that were made for her parents’ convenience long after she no longer lived with those parents. (That point, made by Ian Engle, got his words, picture, and angle into the Grand Rapids Press the next day!) 

Parental convenience (choice) OVER personal autonomy (choice) is the same as money over freedom (i.e. institutional care over choice, Kevorkian’s “understanding” of the woes of his patients over the treatment and support they deserve, or Nazi Germany’s “solution” over the lives of so many millions of innocent people). The fact that Ashley cannot express her choice does not constitute forfeiture of her right to have one. 

Please, do not mourn, ORGANIZE!!! – Theresa Squires, Melinda Haus-Johnson, Laura Hall, Teresa Christmas, Shana Holet, Joe Stramondo, Ian Engle, and Clark (the Weasel) Goodrich 

ADAPT’s voice needs amplification.  Be proud, get Loud! Lead On!!! 

Lansing ADAPT/Grand Rapids ADAPT 

RA’s note: I sure am proud of these two young wonen, as well as the Michigan folks. What an amazing action! I hope to meet Theresa and Shana in Washington, DC this spring.

We have 2 more co-sponsors of the Community Choice Act in the House! WooHoo, keep ‘em coming!

Rep Murphy, Patrick J. [PA-8] - 1/28/2008
Rep Scott, Robert C. “Bobby” [VA-3] - 1/28/2008

I wonder, though, what’s going on in the Senate. We haven’t had any new co-sponsors in several months. I know it’s not for lack of trying.

The Community Choice Act has four more co-sponsors in the House, including, Rep. Bart Gordon, a member of the Health Subcommittee of the House Energy and Commerce Committee!

They are: 

Rep Emanuel, Rahm [IL-5] - 1/22/2008
Rep Gordon, Bart [TN-6] - 1/23/2008

Rep Miller, Brad [NC-13] - 1/23/2008
Rep Peterson, Collin C. [MN-7] - 1/22/2008

Keep ‘em coming!!!!!!!!!!!!

As promised, here is the write-up on what happened at the hearing. I had to be brief, but I think that I covered it all.

Amerine and Mike take in the CCA hearing

The hearing was positive and well-attended by both Energy and Commerce committee members, as well as activists, particularly ADAPT members. Rochester and Philadelphia each had about 50 people in attendance, but there were folks from Connecticut, Delaware, Iowa, Maryland, Massachusetts, Texas, Virginia, and Washington, DC. We all couldn’t fit into the hearing room, so most people had to watch the proceedings from an overflow room (I heard that there were actually three!).

The hearing, titled, “Helping Families With Needed Care: Medicaid’s Critical Role for Americans With Disabilities” was the first hearing of the new congressional session for the Health Subcommittee of the House Energy and Commerce Committee. The committee members began by speaking of their concerns about Medicaid and the recent regulation changes that would have untold negative impacts on people with disabilities. Three committee members (Reps. Baldwin, Deal, and Schakowsky) stated that they were co-sponsors and supporters of the Community Choice Act. Representative Tammy Baldwin (D-WI) stated, “I am a proud and enthusiastic supporter of the Community Choice Act”. Representative Janice Schakowsky (D-IL) observed that “it would be appropriate to have this hearing before the Human Rights and Civil Rights committees”. She then received permission to enter the testimony of Rep. Danny Davis (D-IL), who along with Rep. John Shimkus (R-IL) introduced CCA in the House.

There were six witnesses who testified before the Committee. Diane Rowland, Executive Director of the Kaiser Commission, spoke of recent changes in Medicaid. Stephanie Thomas, of ADAPT, testified about the importance of passing the Community Choice Act, ending the institutional bias in long term care, and fixing the new CMS ruling that reduces the number of days of case management from 180 to 60 for people transitioning from a nursing facility to the community, and only pay for 14 days if the person has been in a facility for less than six months. Ralph Groenfeld, President and CEO of ResCare, spoke about the need for better pay and benefits for direct care workers. Celine Fortin, of the Arc of New Jersey, talked about the CLASS Act, as well as the negative changes in the CMS rulings. She also spoke about the Direct Support Professionals Fairness and Security Act. Aileen McCormick, President and CEO of AmeriGroup Texas, told the story of a man named Henry that her group, with the help of ADAPT, got out of a nursing home, and into the community. She also said that her group and their parent organization, AHIP (America’s Health Insurance Plans), supports the Community Choice Act. Julie Becket, Policy Director of Family Voices, spoke of Medicaid Options for transitioning to work, such Ticket to Work and Medicaid buy-in. She is the mother of Katie Becket, the first child to get on a waiver in the U.S. There is, in fact, a waiver named for Katie.

Pam and Gremmie at the hearing

After the hearing and lunch, most of the members of the Nation of Rochester went to a scheduled meeting with Representative Louise Slaughter to talk about the Community Choice Act, and why she hasn’t signed on. Her excuse was that the bill would cost too much, but she was quoting from the original, inaccurate scoring done by the Congressional Budget Office (CBO). She promised to look into the study by Mitchell LaPlante that shows that the true cost of the Community Choice Act is closer to 1.4 to 3.9 billion dollars, instead of the original projected cost of 20-30 billion dollars.

While a few of our folks were visiting Representatives Kuhl and Reynolds, the bulk of us trooped over to House Speaker Nancy Pelosi’s office. In typical ADAPT style, we took over one of the huge inner offices. We thought that the office staff would send in some lackey to deal with us, but they sent in two of her top staff, Reva Price, the Advisor to the Speaker, and Wendell Primus, the Speaker’s Legislative Director. He also deals with health issues. They promised to let the Speaker know that we were there, and to contact the Congressional Budget Office regarding the new study so that CCA will be scored correctly.

All in all, the hearing was very positive. Some of the Committee members spoke of having to care for family members, so they seemed to understand the need for community care. The Community Choice Act has gained 11 new co-sponsors, including four members of the Health Subcommittee!

Another House Energy and Commerce Committee member signed on to the Community Choice Act yesterday!

Rep. Michael Ferguson [NJ] 1/17/2008

This is GREAT!! Hopefully more committee members will sign on, and get their colleagues in the House to sign on, as well.

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“

On January 15 and 16, 2008, 10 more co-sponsors signed on to the Community Choice Act! There are 2 significant things about this — who the people are, and the significance of the date. Four of the newest co-sponsors are on the House Energy and Commerce Committee, where the crew from Rochester, as well as several other ADAPT chapters were for the hearing on CCA yesterday. Did you notice the date? January 15th is the birthday of Dr. Martin Luther King, Jr.! It’s a wonderful coincidence that Rep. John Lewis, of Georgia, a well-known civil rights activist, signed on to CCA on the 15th, as did Rep. Edolphus Towns, of New York, one of only only three Black members of the House Energy and Commerce Committee, and Rep. Elijah Cummings, of Maryland, another Black member of Congress.

Anyway, here is the list:

Rep Cummings, Elijah E. [MD-7] - 1/15/2008
Rep Doyle, Michael F. [PA-14] - 1/15/2008
Rep Farr, Sam [CA-17] - 1/15/2008
Rep Kaptur, Marcy [OH-9] - 1/15/2008
Rep Kennedy, Patrick J. [RI-1] - 1/15/2008
Rep Lampson, Nick [TX-22] - 1/15/2008
Rep Lewis, John [GA-5] - 1/15/2008
Rep Solis, Hilda L. [CA-32] - 1/16/2008
Rep Towns, Edolphus [NY-10] - 1/15/2008
Rep Waxman, Henry A. [CA-30] - 1/16/2008

We are inside of the hearing room. Unfortunately, the room is much smaller than on the Senate side, so there is an overflow room. If you look around, it is a sea of orange T-shirts of ADAPT members and supporters. I have already seen Yoshiko Dart. We are about to begin.

As I write this, we are loading the buses to go to Washington, DC to attend the hearing on the Community Choice Act before the Health Subcommitte of the House Energy and Commerce Committee. I will check in when we arrive in DC.