The importance of accessibility

Posted on June 30, 2008

by Norita Darling, Office Manager

When my father got older, he developed diabetes.  Back then, in the nineteen seventies, we didn’t have the medications and technology they use now, and my dad had his left leg amputated at the knee.  A couple years later, he had his second leg amputated and began using a wheelchair full-time. 

Now, my father always loved to drive so he decided that he wanted to get hand controls on his 1972 Chrysler.  We found the company who did that and soon he had the controls on his car, making him very happy.  The next thing we needed to do was to get him a license to drive a car with hand controls. 

At that time, the Department of Motor Vehicles was on Chestnut Street in the City of Rochester.  It was very, very inaccessible.  By that, I mean the department was on the second floor of the building, and the only access to the second floor in a wheelchair was by the elevator, but it wasn’t a public elevator.  You could only use the elevator with the help of the maintenance man. Read more

The Power of Recreation

Posted on June 30, 2008

by Anita O’Brien, Coordinator of Recreation Services

What do you think of when you think of “Recreation”?  Perhaps you think of relaxation, free time, play, fun, and a whole variety of activities that people enjoy.  And, yes, those are all wonderful ways to describe recreation!  And, as many of you know, I advocate that everyone participate in as much of this recreation as possible each day!

I’d like to add another thought for you…and that is that recreation holds in it an incredible opportunity to balance inequalities, rectify injustices, and create a more dynamic and diverse community. 

Much of the inequality in our world is the result of one group of people establishing a division with another group of people, and through that division, promoting a sense of superiority over the other group.  This division creates a dominance, a sense of power, and ultimately, a position of control over that other group.  (Over and over again this cycle happens!  Think of any “group” of people and see who they are considered “better than” and “lesser than”.  Some familiar power groups are formed based on Age, Race, Ethnicity, Sexual Orientation; Religious affiliation; etc.)

Why is this significant?  Unequal distribution of power leads to Read more

What is Visitability?

Posted on June 27, 2008

by Celia Adorno Brown, Outreach Coordinator

I had no idea what this was about until I started working for the Center for Disability Rights (CDR).  The Inclusive Home Design Act (H.R. 4202) was introduced in the House of Representatives on 11/15/2007 by Representative Janice D. Schakowsky.  It requires all newly constructed, federal funded single family homes and town houses to meet the standards of visitablity for persons with disabilities.  The home has to have one level with accessibility features. These features are a zero-step entrance, wide enough doors, reachable environmental controls, and a usable bathroom.  With these simple features, a house becomes usable for a person with a mobility disability. 

I believe that all people have a right to live in housing that meets their needs.  People with disabilities have a right to live independently in the community and the Inclusive Home Design Act would signify progress toward securing that right.

This issue may not affect you… today.  However, Read more

Technology and people with disabilities

Posted on June 26, 2008

by Phil Pockey, Programmer

I was hired by The Center for Disability Rights as an IT Programmer in February, 2008. Most of my professional experience with technology has been in K-12 education and adult education working for BOCES in New York State and Intermediate Units (similar to BOCES) in Pennsylvania.

My main responsibilities have been in the administration of technology services for learners of all ages. Some of the most satisfying contributions I’ve been privileged to be a part of have been for the teaching and learning communities of people requiring assistive technologies.

I have learned that technology is much more than just a computer.  I believe we limit ourselves if our thinking is restricted to only the computer or Internet when considering technology or the needs people may have for technology, especially for people with any type of disability. Read more

CDR can help with private pay assistance in the home

Posted on June 25, 2008

by April Oakes, Assistant Director, CDPAS

CDR’s Consumer Directed Personal Assistance Program (CDPAP) isn’t just for Medicaid recipients who require personal care anymore.  CDR recently started offering a CDPAP private pay option for people who are in need of personal care services.  This option is for people who would prefer a consumer directed approach to their personal care or the care of their loved one and have the means to pay for these services out of pocket. 

You may ask why people would choose to use a fiscal intermediary (an agency) when they are ale to privately pay for consumer directed personal care services.  Why not privately pay for attendant services without using a fiscal intermediary?   Can’t I just pay someone under the table to meet my needs?  Isn’t using and agency expensive?

The thought of being an “employer” can seem overwhelming Read more

Day Two of ADAPT Takes on Albany

Posted on June 24, 2008

by Anita Cameron, Systems Advocate

Day two of the Albany action began with the cooperation of Mother Nature -a sunny day, not too hot or too cold, and none of the logistical dramas like the previous day. ADAPT marched from our hotel to the New York State Department of Health for a meeting with Bruce Rosen, the MFP (Money Follows the Person) Project Coordinator, and Coordinator of the NFTD (Nursing Facility Transition and Diversion) Waiver, and Stuart Rosenblatt, Director of the Division of Planning and Policy. We wanted to confirm that the DOB (Division of the Budget) actually sent the NFTD reimbursement rates to the Department of Health. We also had some tough questions for them regarding consumer direction in the NFTD Waiver, the Cash and Counseling model, and Long Term Care Restructuring.

All 43 of us crowded into the small conference room with Bruce Rosen, and immediately, the questions began. Did DOB send the rates? Yes. When would the rates be posted to the eMedNY website? No later than mid July, was the answer.

Ok, the easy questions were over. Now began the tough ones.

We asked, “What are DOH’s plans for adding consumer direction to the NFTD Waiver?”, and were told that there would be consumer direction unless the person needing personal assistance services also had an unmet need for supervision and oversight. Under their definition, “unmet need” means that someone needs supervision and there is not a 24/7 live-in family member. They did agree, however, to look further into how consumer direction could be added to the NFTD Waiver and work closely with the advisory group on this issue. Read more

ADAPT Takes on Albany

Posted on June 23, 2008

by Chris Hilderbrant, Director of Advocacy

Forty-three or so (maybe I should get an exact count – just so we return with everyone?) staff and volunteers from the Center for Disability Rights and Regional Center for Independent Living joined with ADAPT today for a day of action in our capitol, Albany.  We met at the CDR office at 5:00 AM and although strange forces were aligning against us (our first bus had a flat, the door for the wheelchair lift on the second bus wouldn’t close, then it wouldn’t open, then we got people stuck in an elevator on their way to a protest) we ultimately got to where we needed to be on time and had a very productive day.

First on our agenda was A.10440 – our bill to establish an Independent Living Center in Ontario County.  After we got our folks unstuck from the elevator, we amassed our 43ish people just outside the NYS Assembly Chamber.  Although the Deputy Sergeant-at-Arms exhibited some odd behaviors, like whispering in the ear of Dean DeRusso our Deaf Systems Advocate, and telling me that I had never been in a room that I have actually been in about 50 times before, his boss was much more helpful. 

We met with Assemblymembers Joe Errigo and Bill Reilich, co- and multi-sponsors of A.10440, respectively.  We thanked them for their support and briefly discussed the ongoing efforts to establish the center.  We also requested to meet with Assemblymember Susan John and although Ms. John was present in the chamber, the Sergeant-at-Arms reported to us that she was “unavailable” all day.  Having thanked our friends and been unable to meet with one of the legislators that holds the key to future success, we moved on.  Read more

Dealing with compassion fatigue

Posted on June 20, 2008

by Carrie Dunlap, Coordinator or OMRDD Habilitation Services

You might be asking yourself, “What is compassion fatigue?”  It is a physical or emotional exhaustion that causes a decline in an individual’s ability to experience compassion for others. Compassion fatigue develops over time as you start to lose your concern for others.  Individuals might also become isolated, develop poor hygiene, and can have emotional outbursts.  This often happens due to the overuse of your compassion.  Compassion fatigue is not the same as burnout, when the individual is incapable of dealing with their environment, and is more advanced than compassion fatigue.

Those that are at high risk for compassion fatigue are individuals that work as counselors, mental health professionals, medical professionals, advocates, and of course all those working in the humans service field.  Dealing with consumer issues, such as life style adjustments, addictions, discrimination, and accessibility, on a daily basis can cause an exorbitant amount of compassion.  Over time, this leads to individuals becoming emotionally drained, with little left to give to others.  It can also affect individuals who work in the home, and those who take care of family members. Read more

Be an Educated Voter

Posted on June 20, 2008

by Marilyn Parchus, Finance Manager

I recently saw a movie called the The Diving Bell and the Butterfly, a memoir by Jean- Dominique Baudby.  The film depicts Baudby’s life after having a massive stroke at the age of 43, which left him with a condition known as locked-in syndrome.  The condition paralyzed him, with the exception of his left eyelid, so that he could only communicate by blinking.

The film is initially told entirely from the point of view of Baudby, as he wakes from his three-week coma in a hospital in Berck, France.  A neurologist explains that he has locked-in syndrome, an extremely rare condition in which the patient is almost completely physically paralyzed, but remains fully mentally alert.  The viewer hears the thoughts of Baudby, which are unattainable to the other characters, and sees through his one functioning eye.

The film made me think of how we in America do not personally connect with people with disabilities. Read more

How a bill gets one third of the way to becoming a law

Posted on June 19, 2008

by Chris Hilderbrant, Director of Advocacy

Many of you have been following CDR’s efforts to establish an Independent Living Center in Ontario County to serve Ontario, Wayne and Yates counties. 

We received excellent news yesterday! 

By working closely with Senator Michael Nozzolio, our bill PASSED THE NEW YORK STATE SENATE!

Here’s what the process looks like in legalese:

S07264 Actions:

BILL NO    S07264A

03/25/2008 REFERRED TO EDUCATION

05/20/2008 REPORTED AND COMMITTED TO FINANCE

06/06/2008 AMEND AND RECOMMIT TO FINANCE

06/06/2008 PRINT NUMBER 7264A

06/11/2008 REPORTED AND COMMITTED TO RULES

06/18/2008 ORDERED TO THIRD READING CAL.1970

06/18/2008 PASSED SENATE

06/18/2008 DELIVERED TO ASSEMBLY

06/18/2008 referred to education

While we celebrate the third line from the bottom, let me call your attention to the bottom two lines. Read more

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