The Roving Activist’s Blog

Bruce gave me permission to post this. While it is geared towards New Yorkers, anyone can do this, especially if you have senators and congressfolks who have signed on to MiCASSA, but not the Community Choice Act.

This excellant information piece on the Community Choice Act (H.R.1621, and S. 799) comes from Bruce Darling He says:

 
It was pointed out that people might like some talking points for calling their Representative.

Below, I’ve written a piece about how the Community Choice Act would be beneficial for New Yorkers and the state itself.  Some people might think that we don’t “need” the Community Choice Act because we are in New York State.  Indeed, you might even get asked that question.  Well here’s the (not so short) answer.

 
I think the impact on actual people is really important.  Let me list those first.

 
The Community Choice Act levels the playing field and assures choice in the long term “care” system.  Right now, institutional “care” is mandated by the federal government.  States MUST pay for nursing facility care.  The Community Choice Act doesn’t create a new mandate, but it expands the existing mandate so that people who would be eligible for placement in a facility could have the CHOICE to live in the community with supports.  The Community Choice Act would require that states have a community-based option for people who would otherwise be placed in an institutional setting.  Until we get the Community Choice Act passed, institutional “care” will remain the standard/norm.  As other states have run into financial problems, they have cut community based services in order to maintain funding for nursing facilities because the institutions are REQUIRED under federal Medicaid law and community services are not. 
 

Even look at the language that is used.  Home and Community Based Services are often provided through WAIVERS where the state is asking if it can use money that is designated for institutional placement to pay for community based services.  These waiver programs are capped and may run out of slots, meaning that people would need to go into a facility until a slot becomes available.  We haven’t had much of this in New York, but it could easily become a problem here as the state expands the use of waivers. 

 
The Community Choice Act includes assistance with the instrumental activities of daily living.  New York does have an extensive long term care system, but it hasn’t effectively served individuals with Alzheimer’s disease and other dementias.  Although at one time these individuals were served under the personal care program, that changed with a court case and the personal care program (including the consumer directed personal assistance program) don’t assist with instrumental activities of daily living and supports like “safety monitoring”.  Even now, this group of people (who desperately need services) have EXTREMELY LIMITED options in New York.  Consequently families get burnt out meeting the individual’s needs and the person ends up in a nursing facility.
 

The Community Choice Act includes a maintenance-of-effort requirement.  This means that states can not diminish more enriched programs already being provided in the state.  Again, as we face uncertain economic times, this would be particularly important in a state like New York which has a wide range of programs.
 

And the Community Choice Act will also benefit our state.

 
The Community Choice Act provides an enhanced Federal match for the five years before the services become permanent.  With this enhanced match states which begin planning activities for changing their long term care systems and include Community-based Attendant Services and Supports in their State Plan would receive an additional 10% in federal matching funds.  That means New York would get 60 cents on the dollar rather than just 50 cents.  A dime doesn’t sound like much but on the scale we are talking, it’s good money.  And its NEW money!  We could definitely use that to balance our budget.
 

The Community Choice Act also provides an enhanced match (up to 90% Federal funding) for individuals whose costs exceed 150% of average nursing facility costs.  Okay, that one sounds too much like blah blah blah, but it’s really cool.  It helps both the state AND our community.  The cost of serving some people is just really expensive.  We were concerned that this group of people might get “left behind” in nursing facilities because there would be a financial incentive to keep them there.  This provision of the Community Choice Act means that the federal government would pay a higher Medicaid match (up to 90% of the cost) to support these individuals in the community.  A state like New York, which provides a significant personal care benefit (up to 24 hours per day), would get extra federal dollars to serve these people.  More federal Medicaid matching funds… the state likes that.  Back to us and the people we represent.  We like this aspect of the legislation because it takes the heat off of people with more extensive support needs (who for years have been under fire for costing too much) and it because it helps level the financial playing field, it FREES OUR PEOPLE!
 

A word about cost.  Your representative may express concern about a Congressional Budget Office “score” or cost estimate of MiCASSA, the previous version of this legislation.  That score was WRONG! 

 
Use this line and you sound like a policy wonk on Sunday morning television:

“The CBO score included too many people, including people with less significant disabilities who wouldn’t have been eligible for institutional care and people who wouldn’t be income eligible for Medicaid.  The CBO score also included a bunch of other services costs that were NOT in the legislation.  The actual cost would be much smaller than what the CBO estimated.  There’s a study I can send you that discusses this issue in detail.” 
 

Then call CDR, and we’ll send you the study so you can send it out.

 
If they persist with cost, or talk about the “woodwork effect”, I think its okay to be annoyed with them.  When confronted with this I ask, “What’s the appropriate price tag for my mother’s freedom to live at home?”  And by the way, the “woodwork effect” is actually “unmet need” and represents people who NEED these services and don’t have them.  They have just argued why we need the Community Choice Act.  We are NOT cockroaches. 

 
Remember that March 17th through 28th is the Spring District Work Period. 

 
Our representatives will be in our home districts.  So you can call them locally or even meet with them to talk about CCA.  Although the action alert focused on six representatives who were previous cosponsors who aren’t currently on the legislation, we wanted to make it easy.  The real goal is to get ALL of our representatives signed on.  If you are curious where other NYS Representatives stand on the Community Choice Act, I’ve listed them below. 

 
Ackerman, Gary L.; New York, 5th ……………….. Never signed on to any version

Arcuri, Michael A.; New York, 24th ……………….. Never signed on to any version

Bishop, Timothy H.; New York, 1st ……………….. Never signed on to any version

Clarke, Yvette D.; New York, 11th ………………… Never signed on to any version

Crowley, Joseph; New York, 7th …………………… Never signed on to any version

Engel, Eliot L.; New York, 17th ……………………. Previous cosponsor, not signed on

Fossella, Vito; New York, 13th …………………….. Never signed on to any version

Gillibrand, Kirsten E.; New York, 20th ……………. Never signed on to any version

Hall, John J.; New York, 19th ………………………. Never signed on to any version

Higgins, Brian; New York, 27th …………………….. Never signed on to any version

Hinchey, Maurice D.; New York, 22nd ……………. Signed on 9/6/2007

Israel, Steve; New York, 2nd ……………………….. Never signed on to any version

King, Peter T.; New York, 3rd ………………………. Never signed on to any version

Kuhl, John R. “Randy”; New York, 29th ………….. Signed on 3/3/2008

Lowey, Nita M.; New York, 18th …………………… Signed on 11/15/2007

Maloney, Carolyn B.; New York, 14th ……………. Signed on 2/25/2008

McCarthy, Carolyn; New York, 4th ………………… Signed on 10/9/2007

McHugh, John M.; New York, 23rd ……………….. Previous cosponsor, not signed on

McNulty, Michael R.; New York, 21st ……………. Previous cosponsor, not signed on

Meeks, Gregory W.; New York, 6th ………………. Never signed on to any version

Nadler, Jerrold; New York, 8th ……………………… Signed on 10/15/2007

Rangel, Charles B.; New York, 15th ………………. Signed on 10/25/2007

Reynolds, Thomas M.; New York, 26th ………….. Never signed on to any version

Serrano, Jose E.; New York, 16th …………………. Previous cosponsor, not signed on

Slaughter, Louise McIntosh; New York, 28th …… Previous cosponsor, not signed on

Towns, Edolphus; New York, 10th ………………… Signed on 1/15/2008

Velazquez, Nydia M.; New York, 12th ……………. Previous cosponsor, not signed on

Walsh, James T.; New York, 25th…………………. Signed on 5/14/2007

Weiner, Anthony D.; New York, 9th ………………. Never signed on to any version

 
In case you are wondering… both of our state’s Senators are cosponsors of the Senate version.

Senator Schumer was EXTREMELY SUPPORTIVE at the Senate Finance Committee Hearing and really deserves our gratitude.
Good luck with those calls and visits!
Bruce Darling

NYS ADAPT

 You can also have people contact their representatives and send them a message about the Community Choice Act by using CDR’s CapWiz system.  http://capwiz.com/rochestercdr/issues/alert/?alertid=10155901&type=CO&show_alert=1

We have two more Community Choice Act co-sponsors in the House. They are:

Rep Davis, Susan A. [CA-53] - 1/28/2008
Rep Jackson, Jesse L., Jr. [IL-2] - 1/29/2008

Great work ADAPTers and Activists! Keep ‘em coming!!!

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.

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.

It’s confirmed! We have a meeting with Rep. Louise Slaughter on January 16th, the same day as the Community Choice Act hearing. That’s great, because we want to speak with her regarding CCA. In the past, she has been a co-sponsor of CCA’s predecessor, MiCASSA, but since she is now Chair of the House Rules Committee, a VERY powerful position, it seems that she has some second thoughts. To top it off, her staff have been incredibly rude and dismissive of ADAPT. Chris and I collaborated on a letter demanding to meet with the congresswoman, herself, since her staff has chosen to blow us off. We’ll see what she has to say to us. It should be interesting.

We also have a meeting with Rep. Reynolds and Rep. Kuhl’s staff. That should be interesting too, particularly with Kuhl’s folks, since it is abundantly clear that he doesn’t like us.

We’ll also meet with staff from Senator Schumer’s office. That will be a positive meeting, as Schumer has a “Rock Star” moment with Rochester ADAPT back in September when we attended the Senate hearing on CCA. I’ll let you know what happens.