The Roving Activist’s Blog

We’re off to Washington, DC today for the ADAPT action. I’m to be picked up by Arlene at 5:30 this morning. By 6:30, everyone should be at the office. There are 51 of us going, and we’ll have our famous tour bus, along with 3 vans. Hopefully, we’ll make it to DC by 8 or 9:00 pm.

Thankfully, I have a replacement phone, as my previous one was broken when I was mugged last Thursday. I’m ok physically, but still kind of twitchy mentally, and emotionally, trying to hang in there, and not let the spineless punk win by causing me to fall apart. That’s why this trip will be so important and good for me.

With cell phone in hand, and colored flag on my back, I’ll join the cadre of ADAPT video journalists who will document the events of each day. I’m looking forward to seeing my friends, and hitting the streets to FREE OUR PEOPLE!!!

I’ll be dropping in from time to time to update you on the day’s events.

Here is Arlene’s account of our trip to Abany for Disability Awareness Day, where our colleague and ADAPT member, Shelly Perrin, was one of the recipients of the Achievement Award given by the State Senate.

Shelly Perrin 2007 New York State Senate Achievers’ Award Winner

The 27th Annual Senate Disabilities Awareness Day saw another of Rochester’s own recognized:  Shelly Perrin. This achievement is intended to honor people with disabilities in overcoming boundaries and breaking barriers. Twenty-three individuals from across New York State were recognized. Wanting to be well rested and refreshed for the following days, Shelly Perrin and Company (Arlene Wilson, Anita Cameron) left on Monday April 23rd. They stayed at 74 State Street (and yes, that is the name of the hotel).

Q: What are the odds of meeting Lt. Governor David Patterson personally in Albany?

A:  Great, if you are Shelly Perrin!

Free time CDR Style
After arriving in Albany, Shelly met up with family and went to get something to eat, and relax in the hotel. By coincidence, Lt. Governor David Patterson, Senate Minority Leader Malcolm Smith and assorted legislative staff were doing the same. Advocates, being ever vigilant, went over and introduced themselves to Lt. Governor Patterson, who was warm and friendly. We then brought him over to meet Shelly Perrin and family. Lt. Governor Patterson congratulated her on her accomplishment, shook her hand and wished her and the family well.  Anita and Arlene stayed at the lounge, while Shelly turned in early. Both advocates, being well schooled in how to ADAPT, availed themselves of the opportunity to talk politics and sing (not in that order) with some of the Lt. Governor and Senator’s staff, at the piano—and took some requests. (Even R & R time can be productive!)

Award Presentation
Tuesday morning Shelly Perrin and her entourage (Arlene Wilson, Systems Advocate, Anita Cameron, Systems Advocate, and sisters Doris and Gloria) headed over to the Legislative Office Building, where Shelly received the red carpet treatment. Ms. Perrin was warmly greeted by the staff of Senator Joseph Robach, and presented with a corsage. After her photo session, Shelly was whisked away for the awards presentation (look for her on the local news in the next few days). Senator Robach presented the award to Shelly, amid much applause.

The Tour
After a tasty luncheon, Shelly’s private tour guide, Randy, arrived. Randy took us on a ‘behind the scenes’ tour of the Capitol. We were given a history of the Capitol building, and saw: the Statue of Liberty (in its original state), the historical flag collection, the War Room (and its historical battle murals on the ceiling), the private portraits of NY State governors, and the Assembly and Senate chambers. We got to ask a lot of questions, take lots of pictures, and see the Million Dollar Staircase.

After the tour, Shelly was whisked off to Senate chambers, and given special seating on the floor of the Senate. Here, Senator Robach spoke about the wonderful advocacy work done by Shelly Perrin. The Speaker of the Senate read the resolution, making April 24, 2007 Disability Awareness Day. More photos were taken with Senator Robach, and we were escorted downstairs, ending a whirlwind day of action and excitement.

Congratulations Shelly Perrin!

I am getting ready both physically and psychologically for the ADAPT action in Washington, DC from April 28-May 3, 2007. I can’t wait to join my ADAPT sisters and brothers to fight to FREE OUR PEOPLE!!! It will be wonderful to see my old friends again, and make new ones.

50 of us from Rochester will be travelling by charter bus down to DC. It will be my first time going on an ADAPT action as part of the Nation of Rochester, and I am a bit nervous, but I am sure that everything will be ok.

I am supposed to be one of a cadre of ADAPT video journalists who will videotape parts of the action from our cell phones, but mine was broken on the night of the 19th of April when I was mugged (more on that in another post). Fortunately, I have insurance on my cell phone, and was able to order a replacement early yesterday morning. It should get to me by no later than Wednesday.

I will keep everyone abreast of what happens on the action.

Baby Emilio’s hearing was postponed until May 8, and he will receive treatment at least until then. Keep Emilio and his family in your thoughts, and don’t stop working to get a permanent rwprieve from deathrow for this precious little boy.

I attended a meeting tonight at St. Monica Church about the Brooks Village Development Project. This project, which has been in the works for a couple of years, will make Genesee Street, from Brooks to Cottage a more pedestrian friendly area, more like a village than a main drag. There will be renovations to the streets and crosswalks, and fancy streetlights will be added to increase safety. The streets will be redesigned in such a way as to reduce traffic, as well.

Some residents of the area were concerned about the traffic ramifications, and I had a few questions of my own regarding accessibility. Afterwards, I spoke with Paul Way, Manager of the Street Design Project for the City of Rochester. He will send me all of the announcements for upcoming projects, and we will work together to address some concerns regarding truncated domes in curb cuts. I will keep you abreast.

Here is a report from Arlene about a community meeting that I hosted on April 11th.

Take Me to the River—a Community Meeting on Brooks Landing

Thirty-five people attended a community forum hosted by Anita Cameron, Systems Advocate, of the Regional Center for Independent Living, on the Brooks Landing Development. John Borek from Sector 4 Community Development Corporation spoke on the twenty-year dream that is becoming reality. He spoke about the strengths of the Southwest sector of Rochester- 83 churches, civil war historical sites, the Sibley tract- and it’s potential. This project is a river front economic development collaborative effort of the City of Rochester, Bergmann Associates, the University of Rochester, Sector 4 Community Development Corporation, and the 19th Ward Neighborhood Association. He spoke about the current construction of an extended stay hotel (with balcony access to the river), boat launch, office building, retail shops, and pedestrian trail. Future plans for the area include a coffee house (Urban Brew) on the Northwest side of the intersection, as well as a future U of R residence hall.

Rick Rynski, Economic Development Specialist (City of Rochester), and Mark Johns, Senior Landscape Architect (Bergmann Associates) presented plans and architectural renderings of the hotel site, on the Southeast corner of Brooks and Genesee, the business offices (leased by U of R) and shopping complex on the Northeast corner. The drawings showed boat launches, pedestrian trails and wheelchair accessible parking for the extended stay hotel.

The audience posed questions regarding accessibility of the office building. Concerns were expressed about the lack of direct wheelchair access from the boat dock to the hotel’s rear entrance. Kathy Tanchick shared a story of the collaborative review process of remodeling plans with the Strathallan Hotel, and the opportunities this presented for the disability community to contribute to the economy of the area, through planning and hosting events and conferences. Bruce Darling talked about the need for developers and organizations to move past meeting minimum accessibility standards, to embracing the concept of full accessibility, stating ‘separate is not equal’.  After several impassioned comments, Chris Hilderbrant was able to enlist a commitment for a future meeting, to discuss accessibility. The meeting ended with a tour of the facility, to illustrate the aesthetics and viability of a fully accessible building.

Ground has been broken on the extended stay hotel; it is slated for completion in April 2008. A drawing of the project and details are available at http://rocwiki.org/Brooks_Landing_Project

Here are some thoughts from Chris:

After this presentation, I asked the builder/developer guys if they wanted a tour of the building to see what we had done here in renovating a really run down space into something awesome.  I expected that it would be a quickie tour, they’re builders after all, not service providers – and we had just asked them some heavy questions about the access of their projects.

BUT.

These guys loved the tour.  I’ve seen very few people get as into a tour of our building and agency as these guys did.  As we stopped and talked with staff around the first floor, they got more and more into what we do.  One has a 90 year old mother who’s frustrated with her current aide service.  Another has a close friend with a disability that they’re not yet willing to address.

One of the developers said “You can cut the passion in this building with a knife – it’s incredible”

Another is an adjunct professor of architecture at the U of R… he wants to bring his fellowship students to see how a well designed building integrated with an excellent social conscience can provide great services to the community…

So, in addition to an agreement from them to meet with us to review the access of their projects, we gained:  a couple new referrals, an opportunity to educate young architects, and a much greater understanding within the minds of these designers of why we push so hard to make their projects accessible.

I was quite pleased.

There will be a meeting between the Brook’s Landing folks and some of us at CDR/RCIL. That meeting will take place on April 23rd. I will keep you posted.

I’m playing a bit of catch-up here. I’ve been a bit busy, but thought I’d tell about our trip to Albany for the MISCC (Most Integrated Setting Coordinating Council) meeting, along with a report from Arlene about the community meeting that I hosted the following day.

The MISCC Meeting

On Monday, April 10th, bright and early, we headed out. I was picked up by Dean, and taken to the office, where we piled into Chris’s car — Chris, Dean, I, and the Taggart twins, Pam and Pat. We headed over to another ADAPT member’s house where we were met by Arlene, who got everyone else into the RCIL van, and after getting some gas, off we went.

The ride was uneventful. I found that Chris and I shared some musical tastes, namely, Rock and Metal. We made a bathroom stop, and strangely, another gas stop for the van. Despite our best efforts, we got there 30 minutes late, but I heard later that the meeting had started late, so we didn’t miss much. When we got there, we were met by Bruce, and were ushered into the room. I couldn’t help but notice that the commissioners were especially nice to us. This was the first meeting under the Spitzer Administration, and our chance to meet the new commissioners, and ask questions of them.

As we entered the room, the commissioners were discussing the future plans of the MISCC. A couple of subcommittees were formed, including one on housing, which Chris and Bruce joined. After that session, the floor was opened up for the audience to ask questions and make statements. Pam Taggart asked the Commissioners to help her get her brother, Billy, out of adult housing, and into his own place with supports. Anthony Griggs spoke of the need for more affordable housing for people with disabilities, and how he had to sleep in his parent’s dining room until he found a place of his own. I asked what the MISCC was doing about accessible public transportation, especially in rural areas. Arlene asked what could be done about our transit authority, which is notorious for its poor service to passengers with disabilities. After the meeting, we met with several of the commissioners, including the Chair. Some of us had a photo op with the Chair. Afterwards, we asked he if she would consider pushing the meeting back an hour or so, to accommodate those of us who must leave our homes at 5:00 am to get to themeetings on time. She graciously agreed to this.

Bruce later told me some interesting things about this meeting. He said that the tone of the meeting definitely changed when we (ADAPT) entered the room. He said that when the meeting began, the Chair entered the room, and saw that the tables were arranged in a way that seemed to shut out the audience. She publicly stated her dissatisfaction with the table arrangement, and began moving the tables into a configuration that was more open and welcoming of the public. Bruce also told me of two important rules changes: audience members would be allowed to speak, and advocates could now serve on subcommittees. I am hopeful that this MISCC can and will roll up their sleeves and do some real work this year.

After the meeting, we visited the offices of Senators Joe Robach, and Mike Nozzolio to ask their support of equal funding of Independent Living Centers in New York. The senators could get equal funding put into the budget if they pushed the issue, and we were asking them to do just that. According to their staff, they will look into it, and get back to us.

We then headed home. Though our ride was uneventful, the van filled up on gas twice more! Some of us suspected a fuel leak, but we couldn’t see any leakage. Some in the van did smell gas, and we later discovered that there was indeed a fuel leak; the gas was leaking onto the exhaust pipe. Thank goodness we all were safe, though I still shudder to think of what could have happened! The van was sent to the shop for repairs, and will be ready for our next trip to Albany on the 23rd.

A Texas judge has issued a Temporary Restraining Order (TRO) to keep doctors from removing 17 month old Emilio Gonzales from the respirator that is keeping him alive. A guardian ad litem, who will represent Emilio’s interest, has also been assigned. There will be a hearing on April 19th, where both sides — Emilio’s mum, and her attorney, and the hospital and it’s attorneys –will present their information and views.

Meanwhile, the Texas state legislature is considering changing the futile care law, which is at the heart of this matter. Though 31 hospitals have refused to take on Emilio as a patient, his mother, Catarina, remains hopeful.

Keep on advocating, though, because once again, this reprieve is temporary. Thankfully, many advocates and activists are keeping Emilio’s story alive, and, and the story has now gone national. I will keep this precious little boy in my heart and my prayers.

Little Emilio Gonzales is running out of time! He was given a reprieve of sorts, but if something is not done to stop this, on Tuesday, April 10, 2007, his respirator will be turned off. You can help! Please sign the petition to save Emilio. Tell Governor Perry to follow the wishes of Emilio’s mother, and don’t allow the doctors to murder him.

http://www.petitiononline.com/emilio16/petition.html

I was snooping around on Senator Barack Obama’s campaign website Thursday evening. I didn’t see anything remotely mentioning disability, so I asked him a few questions, and am waiting for some type of answer. How timely, then, when I checked my e-mail at work yesterday, and found this Action Alert from Justice For All! Please respond to it, and let me know what type of response you get from the candidates. I’ll do the same.

Action Alert: Ask the Candidates to Answer the Questions!

In the last couple weeks, ADAPT, AAPD, National Council on Independent Living (NCIL), and Self Advocates Becoming Empowered (SABE) have worked collaboratively to create a list of questions to present to presidential candidates that reflect the issues most important to our members. (Those questions follow below). We have begun to send this list of questions along with personalized cover letters signed by all four organizations to the following list of candidates, requesting their responses as soon as possible but no later than May 31, 2007.

Democrats:
Hillary Clinton, Barack Obama, Joe Biden, John Edwards, Bill Richardson, Dennis Kucinich, Christopher Dodd

Republicans:
Rudolph Giuliani, Mitt Romney, John McCain, Mike Huckabee, Tommy Thompson, Sam Brownback, Duncan Hunter

Once we receive their responses, we will send them out over JFA and other national listservs to help educate our members as to where the candidates stand on a number of disability issues.

Let’s create some friendly encouragement for their prompt responses and attention to our issues!

WHEN: Starting today!

WHAT TO DO:

Contact these candidates’ campaigns, and encourage them to have the candidates respond to the ADAPT / AAPD / NCIL / SABE list of questions that was sent to them recently.

Ask them to send the responses electronically to Anne Sommers at aapdanne@earthlink.net.

A list of the candidate’s official websites’ “contact us” pages are listed below for your convenience. Most of the sites provide phone numbers, mailing addresses, and online forms in which you can enter questions or concerns. Use one or all of these methods to communicate with each candidate. Feel free to copy/paste the list of questions and the cover letter into the online form or print them off and mail them or fax them.

Hillary Clinton: http://www.hillaryclinton.com/help/contact/

Barack Obama: http://my.barackobama.com/page/content/contact/

Joe Biden: http://www.joebiden.com/footerlinks?id=0001

John Edwards: http://johnedwards.com/about/contact/form/

Bill Richardson:
http://www.richardsonforpresident.com/page/s/contact

Dennis Kucinich: http://kucinich.us/contact

Christopher Dodd: http://www.chrisdodd.com/contact

Rudolph Giuliani: http://www.joinrudy2008.com/contact.html

Mitt Romney: http://www.mittromney.com/ContactUs

John McCain: http://www.johnmccain.com/Contact/

Mike Huckabee:
http://www.explorehuckabee.com/index.cfm?FuseAction=Home.ContactUs

Tommy Thompson: http://www.tommy2008.com/ContactUs.aspx

Sam Brownback:
http://www.brownback.com/s/Contact/tabid/108/Default.aspx

Duncan Hunter: http://www.gohunter08.com/inner.asp?z=3

If they say they have not yet received the information, gladly offer to provide them with a copy of the cover letter and the questions, and be prepared to fax, email, or hard copy mail it to them. We would love for them to receive multiple copies of the questions to create top-of-mind awareness and make our issues hard to ignore.

~~~~~~~~~~~~

April 5, 2007

Dear Presidential Candidate,

We write on behalf of ADAPT, the American Association of People with Disabilities (AAPD), National Council on Independent Living (NCIL), and Self Advocates Becoming Empowered (SABE) to explore your policy agenda as it would effect the more than 50 million Americans with disabilities. All four of our national, cross-disability membership organizations are nonpartisan and share the goal of self-determination and full participation in all aspects of society for our community.

In an effort to inform our members of the candidates’ policy priorities and concerns, ADAPT, AAPD, NCIL, and SABE have created questions that address the issues most important to our members.

We would like candidates to respond to these questions with the intention of sharing candidates’ answers not only to our own members but also beyond our membership bases by posting the responses on our websites and circulating the responses over our national email listservs.

Please respond to the attached list of questions as soon as possible but no later than May 31, 2007. Please send responses electronically to Anne Sommers at aapdanne@earthlink.net. Feel free to address any questions or concerns to us directly using the information provided below.

Thank you for your attention and concern.

Respectfully,

Bob Kafka (Organizer, ADAPT)
Andrew J. Imparato (President & CEO, AAPD)
John A. Lancaster (Executive Director, NCIL)
Julie Petty (Chair, SABE)

********

CANDIDATE QUESTIONS:

1. POLITICAL LEADERSHIP

a. Do you support the creation and appointment of a permanent Assistant to the President for Disability Policy at the White House?

b. How will you make sure qualified people with disabilities
will be a part of your political team and, if elected, as
part of your administration?

2. EMPLOYMENT

a. What steps would you take to reduce employment barriers and improve employment outcomes for Americans with disabilities?

b. How would you reform the federal income support programs (Supplemental Security Income and Social Security Disability Insurance) so that beneficiaries enjoy a greater standard of living and participate more fully in the labor market?

c. According to the U.S. Equal Employment Opportunity Commission, between 1993 and 2004, federal workers with significant disabilities left the federal workforce at rate more than seven times the general reduction in the federal workforce during that period. What actions would you take to ensure that qualified workers with disabilities are given meaningful opportunities to participate in the federal workforce at all levels?

3. HEALTH CARE for ALL

a. What steps would you take to ensure that people with disabilities have access to affordable, quality health care that is responsive to their individual needs?

b. How or will you use managed care principles to deliver healthcare services?

c. How would you improve the quality of health and rehabilitation services provided to veterans with disabilities?

d. How would you improve the quality of health and rehabilitation services provided to Native Americans with disabilities? Do you support the reauthorization of the Indian Healthcare Act?

e. How will you assure people with disabilities have fair access to Medicare Part D prescriptions?

f. How will you address the inequities caused by the Medicare “homebound” rule?

g. Do you support ongoing Congressional efforts to ensure mental health parity in health insurance (S. 558, H.R. 1367)?

4. LONG TERM SERVICES AND SUPPORTS

a. How would you address America’s increasing need for home and community-based long-term services and supports (such as personal assistance services, respite care, and other supports)?

i. Do you support the Community Choice Act of 2007 (S. 799, H.R. 1621) and/or the Community Living Assistance Services and Supports Act of 2007 (CLASS Act of 2007)?

ii. What other steps would you take to help states implement the Olmstead v. L.C. Supreme Court decision and help address the institutional bias in the current Medicaid system?

b. Will you propose integrating acute and long term services by using integrated managed care principles?

c. How will you address the shortage of community direct care attendants?

d. How will you address the lack of coordination between Medicare and Medicaid policies?

5. HOUSING

a. What would you do to increase the availability of affordable, accessible, integrated housing opportunities in the community for low and moderate income people with disabilities and their families?

b. How will you assure the vigorous implementation of all Fair Housing laws?

c. How will you assure that HUD implements programs that will assist states in complying with the Olmstead decision?

6. TRANSPORTATION

a. What would you do to expand access to affordable, accessible transportation for people with disabilities, especially in rural areas?

7. EDUCATION

a. How would you ensure that students with disabilities are included within and accommodated as part of the accountability measures of No Child Left Behind?

b. Do you support full federal funding for the Individuals with Disabilities Education Act (IDEA)?

c. What ideas do you have for strengthening federal enforcement of IDEA?

d. What ideas do you have for increasing the high school graduation rate of students served by IDEA?

e. How would you improve services for students transitioning from school to employment? From high school to higher education?

8. TECHNOLOGY AND TELECOMMUNICATIONS

a. Do you support legislative measures to require that Internet technologies be made accessible to and usable by people with disabilities?

b. What measures would you propose to ensure that consumer electronic and telecommunications devices are accessible to and usable by persons with disabilities?

c. How would you ensure enforcement of Section 508 of the Rehabilitation Act and Section 255 of the Telecommunications Act?

d. Would you support restoration of full funding for the Technology-related Assistance for Individuals with Disabilities Act programs?

9. VOTING

a. What steps would you take as President to ensure that voters with disabilities are able to vote privately and independently, consistent with the requirements of the Help America Vote Act (HAVA)?

b. Would you require the Census Bureau, in its surveys of people with disabilities, to ask questions regarding whether the respondents are registered to vote and whether they voted in the last election?

10. CIVIL RIGHTS

a. Of the existing members of the U.S. Supreme Court, which justices do you consider models for the kinds of federal judges you would appoint if elected president?

b. Do you support an ADA Restoration Act, such as the bill introduced in the last Congress?

c. What steps will you take to protect the diminishment of the civil rights protections under the ADA?

11. INTERNATIONAL HUMAN RIGHTS

a. Do you support U.S. ratification of the United Nations Convention on the Rights of Persons with Disabilities and its Optional Protocol?