The Roving Activist’s Blog

Here are two stories from the Democrat and Chronicle. One is a Speak Out piece by Chris Hilderbrant, and the other is about reactions to Gov. Paterson, with a quote from me.

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Judge Paterson only on his abilities

David Paterson will be the first African-American governor of our state and the first blind governor in our nation’s history.

Some people already are questioning his ability to be governor simply because he has a disability. Paterson has lived a life of challenge and achievement. He has demonstrated that he can handle a demanding schedule, and we can expect that he will continue to do so. Whether or not he will be a good governor has nothing to do with his ability to see.

Some in the disability community have assumed that disability issues now will be addressed at the highest levels of state government. While Paterson as a state lawmaker was a strong advocate for the voting rights of people with disabilities, he never led on other crucial disability issues.

In the days ahead, he will have an incredibly challenging job. When he does well, he deserves our support. When his ideas are not the best, he should be held accountable. This is what we should expect of all our leaders, whether or not they have a disability.

Advocates for people with disabilities hope to work closely with Paterson to address critical disability issues. People with disabilities face barriers in housing, transportation, voting and employment. Seniors and people with disabilities are forced into nursing facilities and other institutions because they can’t get community-based services. We hope Paterson will work with the disability community to address these issues and make New York a state where people with disabilities have equal opportunity, for success or failure, based not on their disability, but on their abilities and accomplishments.

Paterson’s rise to the highest position in New York’s government demonstrates what can be achieved by a person with a disability, given the needed supports and accommodations. We hope his leadership will create a New York where having elected officials who have significant disabilities is the norm and no longer newsworthy.

While Paterson’s disability will make his transition to the governorship unique and historic, he will have to perform. He will be lauded or criticized depending on his actions. That’s all any of us can ask for.

Hilderbrant is director of advocacy, Center for Disability Rights.

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Paterson to take the lead

Republicans in the state Senate expressed reservations Wednesday about the next governor, David Paterson, saying he is far more liberal than Eliot Spitzer and might not be as attuned to the needs of upstate as his predecessor.

But Democrats defended Paterson as someone uniquely qualified to heal the wounds of a state government that has been bitterly divided along partisan lines.

“I like him as a person, but on most issues he is way to the left of Eliot Spitzer,” said Sen. Michael Nozzolio, R-Fayette, Seneca County.

Paterson, 53, is to assume the governor’s office when Spitzer’s resignation takes effect on Monday. Spitzer said he is delaying surrendering his office at the request of Paterson, who will use the intervening time to prepare for his new position.

Paterson was a state senator from Harlem for more than 20 years, following in the footsteps of his father, Basil Paterson, who also served as secretary of state.

David Paterson ousted Martin Connor of Brooklyn to become the Senate minority leader in 2003. He was elected lieutenant governor in 2006, becoming the highest-ranking black elected official in the state.

Republicans and Democrats both said he is a far more agreeable figure than Spitzer. And Sen. Dale Volker, R-Depew, Erie County, who has known Paterson for more than 30 years, called him “one of the brightest people I have ever met.”

“All that aside, he is a very liberal person,” Volker said, adding that he disagrees with Paterson on most criminal justice issues and considers him fiscally liberal. “You have to remember, he was born and brought up in Manhattan, and you don’t expect those kind of people to love western New York — except as it benefits the rest of the state.”

On Monday, Paterson will become the first black governor of New York, the fourth in the nation, and the first legally blind governor in the history of the United States. In that, his ascension to the governor’s office has a significance beyond the political arena.

Anita Cameron of Rochester, an African American who is legally blind, said she was “proud and hopeful” about the prospect of Paterson’s governorship.

“Personally, it’s kind of unfortunate he had to get in this way,” said Cameron, a systems advocate at the Center for Disability Rights. “I’m excited that a person with a disability is now our governor. I certainly don’t think it will keep him from doing his job.”

A collaborative style

Rochester Mayor Robert Duffy said he expects that Paterson will succeed in minimizing the partisan divisions in Albany. As for upstate, he said, Paterson called him Tuesday and promised to visit Rochester as soon as possible. “When you speak with him once, you get a sense of the depth of the man,” Duffy said, calling Paterson a “quiet leader.” “He could truly become the perfect person to step in at this time.”

Nozzolio, however, is concerned about Paterson’s focus. “He has represented New York City. He is focused on New York City,” he said.

The lieutenant governor was not available for comment. He issued a statement saying he was saddened by Spitzer’s problems and said he would pray for the governor and his family. He is scheduled to speak to the media today.

The Rev. Marlowe Washington, pastor of Baber A.M.E. Church in Rochester, knows Paterson from the 10 years Washington spent in Harlem during the late 1980s and 1990s.

Washington said he lived near Paterson, who was then a state senator, and was friends with Paterson’s chief of staff.

“He’s a reconciler,” Washington said. “He can bring people to the table. He loves to crack jokes.”

Paterson had a cordial relationship with Senate Majority Leader Joseph Bruno, even when he was minority leader and working to replace Bruno by defeating enough Republicans to take away their majority in the chamber.

Planning for November

That fits with the person known to Michael Keane, Duffy’s deputy communications director, who previously worked for Connor.

“(Paterson) was universally respected by staff,” said Keane, who spent 20 years in Albany. “He had a unique way of treating staff with respect. That’s the way he operates. He treats people with the respect they deserve.”

Democrats hope Paterson’s affable personality connects with New Yorkers, many of whom are just learning about him. They also hope that the party will not be hurt by the downfall of Spitzer, who had symbolized reform and integrity in state politics and had become one of their chief fundraisers.

The November election is expected to be pivotal for Democrats, who are seeking control of the state Senate and need two seats to capture the majority. They picked up three while Paterson was the minority leader.

Nozzolio, who is facing a challenge from Democrat Paloma Capanna, said he was not concerned with partisan political matters right now.

“I’m too busy working on a state budget,” Nozzolio said. “I’m too busy to consider political situations at this point.”

Assemblyman Joseph Morelle, D-Irondequoit, who is also the chairman of the Monroe County Democratic Committee, said he doubts that the scandal will affect the fall elections.

“It may have a positive impact,” Morelle said, “because David will begin to shine as governor.”

JGALLAGH@Gannett.com

BDSHARP@DemocratandChronicle.com

JTERRERI@DemocratandChronicle.com

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Here is a link to a piece by WHAM-Ch. 13 about Gov. Patterson, including thoughts from Chris Hilderbrant and me. Scrool down and click on the link that says About Lt. Governor David Paterson.

http://www.13wham.com/mediacenter/local.aspx

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

None other than…

Rep Kuhl, John R. “Randy”, Jr. [NY-29] - 3/3/2008

Wow! He had signed on back in 2006 after a protest by ADAPT. He didn’t sign on last year due to some kind of “misunderstanding”, and was absolutely rude to us for a long time. I’m not sure why he signed on this time. Perhaps the “misunderstanding” was cleared up (finally), or he was bitten by his conscious. Whatever. I’m just glad that he signed on!

I’m going to be running around in circles for ADAPT and disability rights! Specifically, I’ll be participating in ADAPT’s Fun*Run for Disability Rights. The Fun*Run is part of the 25th anniversary celebrations going on in Washington, DC from April 26-May 2, 2008. The Fun*Run will take place in Upper Senate Park at 1:00 pm on Sunday, April 27th.

People will be walking, running, rolling, skating, or whatever around a  path in Upper Senate Park for one hour. This is not a race, so we all will take our time. I will be rolling around the park in my wheelchair, and will do 20 laps.

Since the object of the Fun*Run is to raise money for ADAPT, and the various ADAPT chapters so that we can continue doing the amazing work that we do, I will need sponsors to pledge donations. Click here to sponsor me. Your donation is tax deductable.

For more information about ADAPT and the Fun*Run, go to www.adapt.org.

I thank you in advance for your support of me, and the fight for disability rights!

Last year, there was a lot of hoohaa here in Rochester about snow removal, and how failure to do so impacts particularly, people with disabilities. I wrote a short piece thanking two kind strangers who helped me get through the snow. The Mayor got himself into a wheelchair so that he could experience what it was like to try and traverse impassable sidewalks. There were several news stories, including and editorial featuring me and the Mayor wheeling in the snow. The Mayor even allocated more money in the budget for snow removal!

Mayor Duffy with me in the snow last year

With all that, you think that there’d be some change. Well, you’d be wrong!

A year on, things have not changed at all. I am still struggling, wheeling in the middle of the street to get to work because someone decided that it is the city’s responsibility, not theirs, to clear the sidewalk in front of their property. The City Code says that the city will clear sidewalks when there is 3 inches of snow (down from 4 inches because of the Mayor’s wheel in the snow), but that property owners are rsponsible for snow removal on their property, yet, they won’t enforce this unless someone complains! Wow, this sounds like the Unfunded Mandate known as the Americans with Disabilities Act (ADA)! People with disabilities have to be the watchdogs and complain, else the ADA won’t be enforced. The code enforcement situation is shameful because there ARE funds allocated to snow removal, and perhaps, if people started getting citations, they’d get better at shoveling the snow in front of their property. Other cities do it. The problem here in Rochester is that the worse offender is THE CITY, and the city doesn’t want to cite itself, so they don’t bother citing others. It’s a catch-22, isn’t it?

Me in the street due to impassable sidewalks

My thought is this: People are using the city’s double standard as an excuse not to do their civic, lawful, and neighborly duty, so the city needs to step up and do what they’re asking others to do, so that they take away the excuses of lazy and apathetic folks. Proper snow removal benefits EVERYONE, and if the city, property owners, business owners, and neighbors worked together on this, instead of pointing fingers and blaming, Rochester would be a better place to live in the winter.

Chris and the Mayor co-authored a piece in yesterday’s Democrat and Chronicle. Here is the link along with all of the comments. I also commented on this issue.

http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20080213/OPINION02/802130325

There was also a piece yesterday about this issue on Channel 10 here in Rochester. I was interviewed for this story.

http://www.whec.com/article/stories/S345879.shtml?cat=566

Come Join Us in Washington, DC For ADAPT’s 25th Anniversary!

 April 26-May 2, 2008

Rochester ADAPT is taking TWO BUSLOADS of folks down for the celebration.

You will have to attend our local ADAPT meetings if you want to go, especially if you are new, and unfamiliar with things.

The meetings are held at the Edgerton Recreational Center, located at 41 Backus Street at 5:30 pm. There is dinner afterwards for 1 dollar. We usually have interpreters there, so if folks in the Deaf/HoH community want to attend, please let me know so that we can make certain that we have an interpreter.

Meeting dates

Tuesday, February 19
Thursday, March 6 — Mandatory!
Tuesday, March 18 — Mandatory! 
Thursday, April 10 — Mandatory!
Tuesday, April 22 — Mandatory! 
Thursday, May 8

The meetings in March and April are mandatory if you want to go on the trip!

If you are interested in going on the trip, and you have never travelled with ADAPT, please come to the February meeting so that you can familiarize yourself with us, and what’s going on, as well as get answers to many of your questions. There will be a cost for the trip, but it isn’t very much, and you can pay over time until the trip. If you are CDR/RCIL staff, there is no cost, but of course, bring money for food, T-shirts, etc.

If you have any questions, or want to go, please contact Anita Cameron at 585-546-7510

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!

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.