The Roving Activist’s Blog

My friend Larry W., from Denver, sent me this link to a YouTube movie of the Free Our People March. Its pretty good, and it brought back memories. I was one of 210 folks who went on the March. The picture at the top of this page, or beneath the title if you’re accessing this post elsewhere, is from the March. It was fun, exhausting, stressful, uplifting, and everything in between. It was something that I will never forget, and I would do it again in a heartbeat! You have to have been there to truely understand what it was like!

http://www.youtube.com/watch?v=OK2Hwp5by64

Here is a link to my March scrapbook where you can get some idea of what it was like.

http://dreadhead7.com/adapt/scrapbookintro.html

Here is Arlene’s report of the visit to our Center by Kumiki Gibson, Commissioner of the Division of Human Rights. While you’re at it, check out her blog, The Future Doc Wilson. It has lots of good and pertinent information.

A Focus on Systemic Discrimination: A Visit by Commissioner Kumiki Gibson

Disability advocates, staff, and friends gathered for a meeting with the new Commissioner of the New York State Division of Human Rights. Kumiki Gibson toured the building with the Executive Director, Bruce Darling, Chris Hilderbrant, Director of Advocacy, Dean DeRusso (Deaf Systems Advocate) and Anita Cameron (Systems Advocate). Julia Day, Regional Director of the Rochester/Syracuse office of the Division of Human Rights accompanied the Commissioner. Gwen Ashford (Transition Specialist) graciously volunteered to take pictures to capture the event.

The tour began with a group photo session by the outdoor banners, and then moved into the Atrium, where Bruce Darling shared how this part of the building celebrates accessibility. Our journey continued to the public resource area, where the community can access computers, the Internet, and deaf individuals can use the video relay equipment to place calls.

We then proceeded through to CDPAS, Independent Living and the Nursing Facility Transition work bays, where Bruce Darling explained the nature and importance of the work done by our colleagues. At the Independent Living (known as IL) bay, the Executive Director gave examples of the types of calls that staff receives, and what they do. Anita Cameron, Systems Advocate, offered herself as an example — the IL staff helped her to find an apartment. This led to a discussion of the paucity of affordable, accessible, integrated housing, and the discrimination that people with disabilities face.

At the Nursing Home Transition bay, Bruce spoke of the barriers to transitioning folks from nursing homes to the community. The issue of Transportation was raised, with the major problem being Lift Line, and how they seem to be changing people’s times without their permission, and cutting people from the rolls. He stated that Lift Line is late or doesn’t show up 55% of the time, and this very often has a negative impact on a person’s ability to hold a job. Ms. Gibson said that if a pattern of discrimination could be documented, an individual could file a complaint with her office. At the end of the tour, the group joined with staff and community members in the large conference room.  Chris Hilderbrant, Director of Advocacy, served as moderator, directing questions to the Commissioner.

Group Discussion

The Commissioner stated that she wanted the focus of the Division to be on systemic discrimination—eliminating ongoing episodes of repeat discrimination by organizations and businesses. Ms. Gibson felt this could be achieved through education as well as public disclosure. She also offered her position as Commissioner to serve as a bully pulpit to support advocacy efforts against discrimination.

Shelly Perrin asked the first question. Her statement spoke to the need for accessible, affordable housing. The Commissioner said that is not an area they cover, but they do want to know about any issues people have seeking housing. She stated that it is important to address issues of housing discrimination, when landlords are continually showing themselves to be discriminatory. The challenge comes in being that person who will stand up—even if you have decided to pursue an apartment elsewhere. It is important to stand up, to protect the rights of the person who comes after you.

A subsequent question about the occurrence of Iraqi veterans for services evolved in to a discussion on the lack of funding through any of the established systems for home modifications. Fred Dievendorf, from the Regional Center for Independent Living, spoke to the challenges of trying to get people into their homes, after medical treatment and rehabilitation is completed. People can get wheelchairs, but not the ramps to get into their home using the chair.

Anthony Griggs shared issue around hospital staff not including the person with the disability in medical decisions and people with home health aide service not being allowed to bring them into the hospital setting. Bruce Darling explained how the latter impacts the quality of care, as home staffs know how best to assist the consumer.

Julia Day shared that the Division has made some substantive changes under the leadership of Ms. Gibson. One of these is the ability to file a complaint online

http://www.dhr.state.ny.us/complaints.html

Forms will need to be notarized; this service is available through staff at CDR and RCIL. The Commissioner also stated that her office could assist with cases of discrimination in the search for housing.

She ended by saying she is in favor of being aggressive to get people’s attention, to change attitudes. She recognizes and supports the use of a collaborative voice. Ms. Gibson then fielded questions from the group.

Community Questions & Concerns

Ray Kenney spoke on the need for captioning of all state television commercials and gave specific examples. He also spoke to the need for public accessibility through public address (PA) systems and communication in public transit venues (train stations, airports, bus depots). Misty Munson shared that many times TTY is hidden, and has to be requested. Ray Kenney pointed out that TTY is antiquated technology that needs to be replaced. 

There has been a story on the news and in the paper here about a man who went into one of our local hospitals and sexually assaulted a woman with a disability. One of the local television stations wondered how the woman could have protected herself, or how her family could have protected her. Staff at our Center were interviewed, and suggested that people could  let the hospital know that they don’t want their room number made public. Another way, they said, was if a person’s personal care attendant could be with them. Presently, that is not allowed in any hospital that I know of, and folks with disabilities have said that they did not receive proper care, and their health suffered as a result. That is, in fact, true. I saw this with my father, who has a brain injury as a result of a heart attack. He could not commincate coherently, and so he was almost never fed unless my mum fed him. Indeed, almost nothing was done for him, and he often caught virulent infections while in the hospital.

Anyway, while I thought that these were good suggestions, I am incensed because I feel that the first line of protection should have come from the hospital, itself.  After all, unless someone is on a 24 hour deathwatch, or if someone is a star or under police protection, it is impossible to have someone in the room with a patient at all times.

What is especially shameful is that this hospital — and I’m going to go ahead and name it, since they are all over the news — Strong Memorial, had a history with this man. He has been banned from being anywhere on the property for the last 15 years because he kept trespassing on their property. He was arrested twice in the past several years, and did some jail time for it. Then, on March 16th, he entered the hospital, donned a volunteer smock, and entered the room of a woman who was paralyzed from the waist down, and raped her.

Of course, the assailant said that the sex was consentual, that he knew the woman, and that he was asked by the woman’s sister to visit her. He also said that he was a volunteer at the hospital. This guy must be high on something if he expect anyone to believe his story.

Strong Memorial has responded to this incident by requiring all of their volunteers to have photo ID’s, which will eventually be upgraded to swipe cards so that only they will be able to get into the rooms where volunteer smocks are stored.

The administrators at Strong must be smoking something if they think that this will truely address the problem. It won’t. Someone could steal a volunteer’s ID, or make a fake one. Also, they haven’t said a word aboutwho will be checking ID’s at the door. Also, when they do the ID’s, how will they know that the person getting the ID is, in fact, a volunteer, and not someone off of the street?

In my opinion, the first line of defense is not technology, but a real, live human being. There shold be a security guard at the front entrance of the hospital to check visitors, staff, and volunteers in, and to note where within the hospital they are going. Perhaps, the ID could be connected via computer to a hospital database that would contain all of these photos, as well as flags or alerts of people who have been banned for whatever reason. I also feel that a security guard should be stationed on each floor just in case someone manages to get past the front door security. As for security, I believe that those folks should be off-duty police officers, or someone with military training, because from what I hear, a lot of security guards are scaredy-cats, who are scared of people, and will disappear at the first sign of what they perceive to be danger. That’s why I suggest moonlighting cops, or ex-military personnel. Also, Strong would have to pay these guards a good living wage, or they won’t feel that $6.50-$10.00 an hour is enough to risk their life for.

Ultimately, Strong Hospital will have to come up with a better solution to protect thier patients. Once someone comes into the hospital, their thoughts should be on getting well, not worrying about being safe when they are most vulnerable.

Here is a story from R News about the visit to CDR/RCIL from the Commissioner of Human Rights. Arlene is writing our perpective of the visit, and when she finishes with her report, I will post it here.

Human Rights Comm. Visits Rochester
by Scott Fairbanks
Published Mar 28, 2007

Kumiki Gibson tours Disability Center.

The new state human rights commissioner wants disabled people to know they have more than one option to overcome obstacles.

Kumiki Gibson visited Rochester to tour the Center for Disability Rights.

She also assessed the issues facing different community groups, including discrimination against the disabled.

Gibson said many people aren’t aware of her department and what it has to offer.

“We have great human rights laws, especially in regards to the disabled,” Gibson said. “It’s broader than the Federal Disabilities Act and so we want people with disabilities to know we’re here to help and that if they have a complaint, feel discriminated against, they can come to us.”

The New York State Division of Human Rights has eleven regional offices across the state.

The Rochester office is on Monroe Avenue.

Advocacy does work! I saw a stunning example of this today. This past Monday, advocates met at the Association of the Blind and Visually Impaired (ABVI) to discuss the lack of audible and accessible pedestrian signals in Rochester and throughout Monroe County. Arlene and I went, along with a couple of ADAPT members. Also present were staff from ABVI, as well as folks from the local chapter of the American Council of the Blind (ACB), staff from County Legisaltor, Stephanie Aldersley’s office, and Terry Rice, from the County, and Jim Pond, who is the County engineer, and who determines where to place the audible pedestrian signals.

This was a follow-up meeting to one that was held several weeks ago. Stephanie Aldersley wanted to get as many stakeholders together as possible because she was hearing conflicting information about whether the audible and accessible signals were needed. Unfortunately, she was sick, and could not make this meeting.

We discussed the importance of the audible signals, and why there were so few in the County. County staff spoke of the procedure that they follow to install the pedestrian signals, but as Arlene pointed out, there is no real procedure, and county officials seemed to doubt ordinary people’s ability to know what they need, and tended to take a request more seriously when a professional, or someone associated with an organization was involved. In fact, Arlene and I were very passionate in our discussions with the county folk. I spoke of the fact that the street crossing at our Center is in dire need of an audible pedestrian signal, and was denied that when we first applied. Jim says that it was determined that the real problem was the curb cuts, which were in horrible condition, and which led into the intersection, so they got those fixed. I suggested that since Terry Rice kept saying that they were not receiving many requests from the public, that they should initiate a public education campaign so that the public would know where to call to request an audible pedestrian signal. This was not well received, and that led to Arlene’s pointing out that they had no procedure, and that perhaps there needs to be a study of where blind and visually impaired folks travel, so that the signals could at least be placed in those areas. Oddly, the county seems to be proud of the fact that there are 15 crossings out of over 600 in the city and county that have audible signals. Indeed, I felt a sense of resistance from the county employees. Perhaps, we unconsciously let on about our feelings because the county folks, Terry and Jim, kept telling us that they felt that we were approaching them as if they always say no.

To make a long story short, the meeting was interesting, and we all promised to work together. I asked Jim Pond to take a look at our site again, because I thought that the signal on the Northeast corner was difficult to get to for someone who uses a wheelchair. When I got back to the office, I received a call from Jim Pond. He told me that he had checked our corner, and found that the area around the signal that I had described had been paved, but that the button on the signal on the Northwest corner was in the wrong position. He promised that this would be taken care of in two weeks, and also promised that we would get an audible signal there. He didn’t say when though, so I figured that it would be a few months.

Imagine my surprise when today, after work, I went to wait for the bus, and not only saw that the button on the traffice signal had been placed in the proper spot (and was accessible, to boot), but the pedestrian signal was now audible! I couldn’t believe my ears. I was flabbergasted, yet ecstatic. I called Arlene and told her, and she couldn’t beleive it, either. I am going to call Jim Pond tomorrow and thank him. If anyone ever tells me tha advocacy doesn’t work, I will point to this example, among others. Advocates must speak truth to power, persevere, and never give up hope. Sometimes, it takes years to achieve a victory. Sometimes, the victory happens when you least expect it.

This morning Monroe County had a Flu Pandemic Drill at the Dome Center in suburban Henrietta to see if they could handle administering doses of flu vaccine to large numbers of people in a short period of time. Peg O’Brien, the ADA co-ordinator for Monroe County asked CDR/RCIL to participate, so the Advocacy Crew went down. Shelly Perrin came as well. I noticed that there were about 20 or so people with disabilities who attended the drill. Several television stations were there, as well as the newspaper. Each member of the Advocacy Crew were interviewed by the Democrat and Chronicle. Overall, I think that the County could have done a better job, especially dealing with our community. After we went through the exercise, we had a long talk and debriefing with Peg O’Brien about what we felt. Here are some things that could have gone better:

The volunteers must be trained to speak directly to people with disabilities, not to their aides or friends. I had this happen to me. A volunteer kept directing her questions and comments regarding me to Arlene, even when I told her that she should speak directly to me. Only when Arlene insisted that she speak to me did she do so. The same thing happened to Ann Parsons, another lady who is blind.

The volunteers must be sure to identify themselves to blind or visually impaired folks.

Vounteers must take the time to listen carefully to folks with speech impairments, and be sure that they understand, what is being said, and don’t rely on someone who is with the person to translate unless the person with the speech impairment gives their aide or friend permission to translate. One volunteer could not understand Shelly, and tried to rely on Chris to translate until Chris told her to talk to Shelly.

Volunteers must not speak down to, or be patronizing to people with disabilities. I noticed that some of the volunteers tended to speak to me in a certain voice, and tried to pat my shoulders, etc., I tried to handle this with as much grace as I could muster.

Volunteers must not assume that all folks with disabilities live in group homes, institutions, or halfway houses. As I was filling out the form that they gave to each participant, I noticed that one had to provide the name of a person to call in case of an emergency. I remarked that I had no one in New York, as I was new to the state. The volunteer asked wasn’t there staff in my building whose name I could provide. I explained to her that I lived in a regular apartment building, not a group home.

Volunteers must be sure that they are giving correct information to the public. It appeared that some of the volunteers did not really know the information that they were supposed to relay to the public. Some of them didn’t seem to know what they were doing.

The County must be sure that the venue that they choose for these excercises. or for any sort of real life experience must be accessible to all.

If video is to be used, it must be closed captioned for people who are Deaf or Hard of hearing.

If a loud speaker system is to be used, be cognizant of the acoustics of the area. It was very difficult to hear the video and the public address system because the room’s acoustics were horrible. This made it very hard to understand what was being said.

Crisis intervention staff must be available, and identifiable in order to assist people who may become overly anxious. They must try to identify and resolve things before they get out of hand.

Staff must be prepared to bring people with disabilities and seniors who, due to anxiety or fatigue cannot wait in line, to the front of the line. Though some folks may be upset, this is a reasonable accommodation under the ADA.

CDR and RCIL will be working closely with Peg O’Brien to assist with sensitivity training, as well as ensuring that people with disabilities can participate as volunteers and CERT’s in these exercises. I will keep you abreast of how this goes.

ADAPT believes the following principles should be incorporated as minimum standards in any national attendant services program passed by Congress and attendant programs run by the states:

1. Maximum control of the consumer to select, manage and control their attendant services.
 
2. Attendant services must be community-based, in other words non-institutional.

3. Eligibility based on functional need not medical diagnosis, disability and/or age.

4. Services must be available in-home and other locations.

5. Attendant services must be available 24 hours a day, 7 days a week.

6. Back up and emergency attendant services must be available.

7. Program must allow for co-pay\cost sharing for people with higher incomes.

8. Delivery of service must include vouchers, direct cash payment, individual provider model, as well as consumer directed agency model.

9. Health related tasks can be delegated to or done by unlicensed personal attendants.

10. Voluntary training should be available for consumers.

11. Attendants should receive a livable wage and benefits.

12. Attendant services should be based on an agreed upon individual service plan.

Talking Points on the Community Choice Act

The demographics of our country are changing. More and more people with disabilities are living, and could be thriving! Reasons for these changes include: a) the aging process, the graying of America, b) children born with disabilities are living, c) young adults, who previously would have died from accidents or illnesses, are living — thanks to medical technology and other advances.

Our long-term service system must change. Created over forty years ago, it is funded mainly by Medicare and Medicaid dollars, medical dollars not originally meant to meet people’s long-term care needs. We must think out of the box to empower people and allow REAL choices.

The money should follow the individual, not the facility or provider. A national long-term service policy should not favor any one setting over the other. It should let the users choose where services should be delivered. Our current system is not neutral, and it doesn’t reflect people’s choices. CMS’s Money Follows the Person is a good first step, but it is not the whole answer.

The current system is needlessly expensive. We must explore cost-effective ways to meet people’s needs.

Community services have been shown to be less expensive on average than institutional services, and better liked by individuals.

In FY 2005, 67% of our total $94.5 billion long term care Medicaid dollars ($31.2 billion) are spent on nursing homes and other institutional services, leaving only 33% ($13.3 billion) for all community services (waivers, personal care, home health, etc.)

People with disabilities — both old and young — even those with severe mental and/or physical disabilities want services in the most integrated setting possible. Overwhelmingly people prefer community services so they can stay in their own home.

People with disabilities and their families want REAL choice, which means:

a) equitable funding opportunities, b) no programmatic or rule disincentives to community services, and c) options for services delivery which include agency based services, vouchers, and fiscal intermediaries. Empower people with disabilities and families.

Family values keep families together

a) children belong in families b) grandparents at home! c) Mom and dad together with the kids d) communities take care of their own.

Money following the individual can eliminate overburdening government rules and regulations.

A functional system based on need instead of medical diagnosis could end FRAGMENTATION of the service delivery system.

Keeping people in the community allows the possibility for individuals with disabilities to train for work so they can become TAXPAYERS instead of TAX USERS.

The federal government needs to work in partnership with the states to create flexible delivery systems that give people REAL choice.

Change can cause fear of the unknown. Some long time providers of services and families believe REAL choice would threaten what they have. We cannot continue the system as it is today; it is expensive, fragmented, overly-medical and disliked by almost everyone.

There’s No Place Like Home!

The Community Choice Act has been introduced into the House. It’s number is H.R. 1621! Following is a summary, talking points, and some principles of the Act.

Community Choice Act (S. 799, H.R. 1621):  A Summary

The Community Choice Act gives people real choice in long term care options by reforming Title XIX of the Social Security Act (Medicaid) by ending the institutional bias. The Community Choice Act allows individuals eligible for Nursing Facility Services or Intermediate Care Facility Services for the Mentally Retarded (ICF-MR) the opportunity to choose instead a new alternative, “Community-based Attendant Services and Supports”. The money follows the individual! In addition, by providing an enhanced match and grants for the transition to Real Choice before October 2011 when the benefit becomes permanent, the Community Choice Act offers states financial assistance to reform their long term service and support system to provide services in the most integrated setting.

Specifically, what does this bill do?

1) Provides community-based attendant services and supports ranging from assistance with:

Activities of daily living (eating, toileting, grooming, dressing, bathing, transferring),
instrumental activities of daily living (meal planning and preparation, managing finances, shopping, household chores, phoning, participating in the community),
and health-related functions.

2) Includes hands-on assistance, supervision and/or cueing, as well as help to learn, keep and enhance skills to accomplish such activities.

3) Requires services be provided in THE MOST INTEGRATED SETTING appropriate to the needs of the individual.

4) Provides Community-based Attendant Services and Supports that are:

Based on functional need, rather than diagnosis or age;

Provided in home or community settings like — school, work, recreation or religious facility;

Selected, managed and controlled by the consumer of the services;

Supplemented with backup and emergency attendant services;

Furnished according to a service plan agreed to by the consumer that include voluntary training on selecting, managing and dismissing attendants.
 
5) Allows consumers to choose among various service delivery models including vouchers, direct cash payments, fiscal agents and agency providers. All models are required to be consumer controlled.

6) For consumers who are not able to direct their own care independently, the Community Choice Act allows for a individual representative to be authorized by the consumer to assist. A representative might be a friend, family member, guardian, or advocate.

7) Allows health-related functions or tasks to be assigned to, delegated to, or performed by unlicensed personal attendants, according to state laws.

8) Covers individual transition costs from a nursing facility or ICF-MR to a home setting, for example: rent and utility deposits, bedding, basic kitchen supplies and other necessities required for the transition.

9) Serves individuals with incomes above the current institutional income limitation — if a state chooses to waive this limitation to enhance employment potential.

10) Provides for quality assurance programs which promote consumer control and satisfaction.

11) Provides for maintenance of effort assurance requirement so that states can not diminish more enriched programs already being provided.

12) Allows enhanced match (up to 90% Federal funding) for individuals whose costs exceed 150% of average nursing home costs.

13) Between 2005 and 2009, after which the services become permanent, provides enhanced matches (10% more federal funds each) for states which:

Begin planning for activities for changing their long term care systems, and/or Community-based Attendant Services and Supports in their Medicaid State Plan
include Community-based Attendant Services and Supports in their Medicaid State Plan.

SYSTEM CHANGE
14) Provides grants for Systems Change Initiatives to help the states transition from current institutionally dominated service systems to ones more focused on community based services and supports, guided by a Consumer Task Force.

15) Calls for national 5 -10 year demonstration project, in 5 states, to enhance coordination of services for non-elderly individuals dually eligible for Medicaid AND Medicare.

There was a 13-day lull in incidents, and I was beginning to wonder if it had to do with my filing an FTA complaint. Apparently, I spoke too soon.

3/20/07: 5:02 pm. State/Jay, Westbound. Route 10 Dewey. Did not stop. The bus was not full. RGRTA was closed, and I couldn’t get through to the Operations Center.

3/20/07: 5:13 pm. State/Jay, Westbound. Route 10 Dewey, bus 667. Lift did not work. The driver did call this in. He stated that there would be a bus to get us in ten minutes. At 5:26 pm, bus 677 (rescue bus) did come by, but the driver had trouble getting the lift to work. Eventually, it did work.

3/22/07: 9:10 am. St. Paul/Main, Westbound. Route 10 Dewey, bus 677. Lift did not work. I called this in to RGRTA.

3/22/07: 4:30 pm. State/Jay, Westbound. Route 10 Dewey. A consumer of CDR who uses a wheelchair and her attendant was waiting for the bus. The 10 Dewey arrived, but the driver would not let them on, stating that there was another bus right behind him. It was Route 15, an express bus, so of course, it did not stop. This has happened several times to me, and to others who use wheelchairs. That particular bus was not full; the driver simply did not want to take the time to operate the lift. This has become a trend among some drivers, particularly in the afternoon.