New Bill Introduces Hope for Community Based Living to Become a Civil Right

Patty2

 

 

 

 

 

Disability rights group ADAPT has long been advocating for the needs of people with disabilities in institutional care to have access to home and community-based services.  These services are much more desirable for people so they can have their independence and lead satisfying lives right among their own family and friends.  A big step in a positive direction has been taken with the introduction of a new Bill in the Senate this January that would guarantee equal access to this much more desirable type of care.

Senator Charles Schumer (D-NY) introduced a Bill that would make it easier for people with disabilities to receive care at home and keep them out of more costly nursing homes and institutions.  This bill is called the Disability Integration Act, and under it health insurance companies would be required to cover the cost of caring for people with disabilities in the comfort of their own homes.

The law currently provides financial care for people with daily living needs such as washing, dressing, eating, and other necessary activities.   This care is insured only if they are in institutions or nursing facilities.   However, the more desirable and less expensive option of home-based care is very difficult to achieve.  There are often very long waiting lists, caps on services and other circumstances that would hinder a person’s access to home-based care.  Under the new Bill, these blocks would be removed for people so they would be able to live and thrive in their own homes.

Senator Schumer was a co-sponsor of the Americans with Disabilities Act, which celebrated its 25th anniversary just last year.  It seems in keeping with that anniversary that this bill should now come forward.  Schumer called the current situation of rampant institutionalization a “crisis.”  He also stated that, “We cannot go back to the days of warehousing people in institutional care models, nor can we expect that everyone will live with their parents forever.”   The bill would apply to both Medicaid and private long-term insurance care.  It stipulates that states would be eligible for an increase in the federal funding for their Medicaid programs if they comply within a certain time period.

At this time, there are still thousands of people trapped in institutions and movement on this Bill could serve as a beacon of light for their futures.  Advocates at ADAPT said the Bill would be a huge step forward for all of us by finally making home and community based living what is should be – a civil right!

 

 

Advertisements

Happy 25th Anniversary to the ADA! By Patty Black

ADA anniversary 2015

 

 

 

 

 

July 26, 2015 marked the official 25th anniversary of the signing of the landmark legislation, the Americans with Disabilities Act (ADA).    The nation has worked hard over the past 25 years to end discrimination against people with disabilities.  To celebrate the sense of pride over the changes that have been achieved as well as to keep the public aware of the remaining challenges, organizers were busy preparing for this silver anniversary. Many took the time to remember and celebrate by hosting parades and celebrations.  Cities including New York, Philadelphia and Chicago held disability pride parades, and all of the celebrating and excitement is excellent news for a community which has often been historically overlooked and underrepresented.

In New York City, the first of what will be an annual parade was held on Sunday, July 12, 2015 where thousands of participants proudly marched.  This parade had people walking, rolling, and scooting down Broadway from Madison Square to Union Square after New York City Mayor Bill de Blasio opened the event.  Mayor de Blasio spoke about his pride in NYC for being a national leader in supporting the rights of persons with disabilities.   The parade was named “Inclusion, Awareness, Visibility” and although it was a joyous celebration marking a historic event in the lives of our peers, there were certain barriers remaining that needed to be addressed.  Former Senator Tom Harkin, who was an author of the ADA and has been a longtime champion in the disability rights community, spoke on some vital matters.  He served as grand marshal of the parade and talked about the important progress made towards accessibility, yet also pointed out the alarmingly high unemployment rate for people with disabilities and the need to continue advocacy.

One difficulty facing some New Yorker’s who wanted to march that day was that the nearest subway station did not have an accessible elevator.  However, the Metropolitan Transportation Authority (MTA) had arranged for special pickup and drop-off spots for Access-A-Ride and advocates noted that the current accessibility issue is being addressed.  Kevin Ortiz, agency spokesman of the MTA, said that they are set to have 100 accessible subway stations by 2020.  Also, Edith Prentiss (a former NYSILC council member) and transit and disability advocate, suggested that it would be wise to remain patient with slow advances in accessible travel in NYC.

The parade was as an excellent opportunity for advocates to be vocal and open about the changes they hoped for.  Some held signs with slogans  stating the need for law enforcement officials to stop using violence against disabled people, others had signs of unity that declared “we are better together,” and others held ones that asked for more access to public housing and transportation.  One disability activist named Aron Kay summed up the hope, strength and empowerment that comprised this day.  He commented in the New York Daily News, stating that “this parade is a springboard to a goldmine of political action…we must take the good fight into our hands so we achieve our goals of pride, interdependence, and the realization our rights don’t get shoved under the bus!  I feel the rights of the disabled should be an issue with the coming presidential election….”  His words spoke of the changes we still hope to see in our community.  In accordance, some excellent political changes coincided to honor the 25th birthday of the ADA!  These were two vital pieces of legislation that Governor Andrew M. Cuomo signed for the State’s support of people with disabilities, and they were finally signed after two decades of effort by advocates including Frank Pennisi.  One was a law (S.1405) that was sponsored by Senator Carl Marcellino that clarified that it is discriminatory for an operator (public or private) to refuse to remove certain architectural or communication barriers in their areas.  It also eliminated the exception for the barrier removal requirement for public libraries.  The second major piece of legislation signed on this day was A.7766.A which was sponsored by Assemblywoman Aileen Gunther.  This law directs the NYS Office of People with Developmental Disabilities (OPWDD) to examine state laws and regulations pertaining to military family members and offer vital improvements so those laws will better serve these families of people with developmental disabilities.

Finally, there was a celebration in West Capital Park in Albany on July 24 to commemorate and this event featured red, white and blue balloons and “Happy 25th Anniversary ADA” banners displayed around the park, along with cupcakes and the musical ensemble Flame.  This group features 10 talented musicians from upstate New York who also have various disabilities.  Flame has played for a wide variety of audiences from all four corners of the continental United States and has released 4 CDs.  They performed many wonderful songs for the event, which was opened by Roger Bearden, General Counsel for the OPWDD.   The program featured prominent people who spoke of the advances they had seen in the lives of people since the ADA was signed into law back in 1990.  NYS Assemblymember Patricia Fahy commented on how the law has notably affected mainstreaming in schools for all students, and how integration and assimilation is now commonplace.  Jim Weisman, President of United Spinal Association, spoke about accessible transportation and the changes made over the years as paratransit became part of the ADA.  Some of the other speakers included Kerry A. Delaney, OPWDD Acting Commissioner and disability advocates Shameka Andrews, Letisha Comstock and Tony Phillips.  Their words symbolized just how vital the ADA has been in bringing about many necessary changes in our lives that we did not have before.  They spoke about its impact and how life has changed for the better since it was enacted.  One advocate has a fully accessible apartment and also noted how mainstreaming in schools had been important to her own success in life as an advocate and speaker for others.  Another pointed out how we have changes we take for granted such as sidewalk curb cuts and accessible vehicles, as well as disability centers at colleges that have allowed her to attend and find success and will pave the way for future students with disabilities.

It was clear from listening to the speakers that we while we may have more changes and barriers to overcome, we have surely come a long way from where we were 25 years ago since the ADA was signed into existence!

 

 

Chores By Brad Williams

Williams

It is that time of the year. Time to buckle down and get busy. I’m not talking about spring cleaning – nor am I referring to the hours of yard work ahead of us after a long winter. Instead, in the realm of SILC-dom, it is a state plan year.

Subsequently, NYSILC has prioritized its committee work for 2015. So our task at hand will be to engage our committee structure. Of particular interest are the Needs Assessment and Statewide Plan for Independent Living (SPIL) committees.

The Needs Assessment Committee, or NAC, will review existing data, conduct surveys, and compile the information into a report to identify priority areas important to independent living. The SPIL Committee will re-tool the formulation process to accommodate changes enacted by the Workforce Innovation and Opportunity Act (WIOA). The committee will then work to provide a process to obtain input on the next IL State Plan for 2017-2019 in the fall of 2015.

How can you help? Be an active participant in the process! First, when the NAC distributes surveys, please respond and give us your feedback. You can also help by redistributing the survey to others to expand the potential number of respondents. Second, this September, NYSILC will announce the various ways you can provide input about the next IL State Plan for 2017-2019. Please comment. Look for correspondence, check in with your local ILC, and or monitor the NYSILC home page at www.nysilc.org for details.

Like a lot of chores, the effort that you put in will directly translate to the satisfaction you feel in the end. Your active participation in this process will help to define our priorities!

Don’t Ask What is Wrong – Ask How You Can Help: Becoming Trauma Informed By Patty Black

 

 

Patty2

I have alway preferred to blend into the background of my social environment.  I like to stay in the back and absorb information – this is part of my personality, a way I have always preferred to be.  I planned on doing this as I excitedly traveled to my first NYAPRS Conference in Kerhonkson, NY the week of September 9th.

The  NYAPRS 31st annual  conference  almost immediately  held up to its long standing reputation as an outstanding wealth of information and resources for New Yorkers interested in the current mental health agenda. While featuring many information packed workshops, it also had great entertainment with award winning blues guitarist Rhett Tyler, Mental Health Comedian David Grenier, and the legendary “mothers” of the mental health wellness movement all coming together on stage one afternoon to speak of the rugged terrain they crossed in the beginnings of the movement for mental health rights.      I could feel this energy buzzing throughout the conference and inside the workshops on Stigma and “Trauma Informed Environments” and again when I heard how the national Substance Abuse and Mental Health Services Administration’s (SAMHSA’s) National Center for Trauma-Informed Care (NCTIC) is currently working to build awareness of trauma-informed care and promoting the implementation of trauma-informed practices in health programs and services.

SAMHSA included the following in defining traumatic experiences: “dehumanizing, shocking or terrifying, singular or multiple compounding events over time, and often include betrayal of a trusted person or institution and a loss of safety. Trauma can result from experiences of violence.  Healing is possible.  Although exact prevalence estimates vary, there is a consensus in the field that most consumers of mental health services are trauma survivors and that their trauma experiences help shape their responses to outreach and services.”  With that being a truth, it just makes sense that someone who had been through a horrible or terrifying experinence would react or respond accordingly to the way a health care system or setting is defined. Therefore, it would make perfect sense to be sensitive to what a person may have encountered that would drastically alter their perceptions.

Trauma-informed care attempts to engage those people with histories of trauma in ways that recognize that people will have trauma symptoms and acknowledges the role  their trauma has played in their lives. NCTIC facilitates the adoption of trauma-informed environments in the delivery of a broad range of services including mental health, substance use, housing, vocational or employment support, domestic violence and victim assistance, and peer support. In all of these environments, NCTIC seeks to change the paradigm from one that asks, “What’s wrong with you?” to one that asks, “What has happened to you?”

Many brave people offered their stories and told of ways they had found hope, faith and strength again – we heard from survivors, peers, professionals, and professionals who were also survivors – others who were living lives as parents, workers, daughters, teachers, friends, etc.  There was a wonderful workshop on ending SELF-stigma and that is something that can be controlled.  After all, we can’t control how others feel about us or treat us, but we can and should work on thinking well of ourselves.  But as SAMSHA so eloquently stated above, having a trauma-informed system of support around you can be incredibly helpful and healing and the one thing to put an extremely traumatized person back on the road to recovery.

Sadly, I cannot explain away all the recent events that have made headlines or made the issues of stigma in the mental health community that much worse.  I feel horribly for the myriad tragedies in our world, from what is happening  in Syria,  to the Boston Marathon Bombers, to so many innocent lives lost for no reason.  It is horrifying when the news informs us again of more tragic mass murders and horrifying again to hear so much commentary about mental illness being the main root cause.   Yes, while there may be some people out there with mental illness who are violent, it is far more likely for many vulnerable people to become victims themselves!  Also, the term “mental illness” has never been my favorite – however, I know it is not going to go away.  There are so many nuances and variables and countless other ways to define a person.  Often, when  one gets that label, that can become their “master identity” and people have a hard time seeing beyond it to all the other good qualities and traits that define a person.  Actually, this is where ending SELF-stigma can come in handy.

In our world, there are countless murders, rapes, and atrocities that are committed by people who do NOT have a particular mental illness.   It is a cold, hard fact that many people who are crime victims and who are hurt and wounded often go on to develop “mental illness” – such as trauma survivors – and become members of this community  and it becomes a vicious cycle.  While I don’t see this cycle ending in my lifetime, I do see glimmers of hope in a better, more informed and open minded future.  I truly heard some amazing ideas at this conference and I saw hope in them, particularly in having systems become more open-minded and better informed.   The Guidebook I was introduced to at one of the sessions is a wonderful beginning resource for female survivors and those who may want to help become better informed and more aware.   Engaging Women in Trauma-Informed Peer Support:  A Guidebook – by Andrea Blanch, Beth Filson and Darby Penney (with contributions by Cathy Cave) http://www.ct.gov/dmhas/lib/dmhas/trauma/EngagingWomen.pdf

Disabled Feminist Speaker is NOT Inspirational! By Patty Black

  Mom and Jess 

  This past February, I had the pleasure of attending the first in a new series of programs at the recently established “Pat’s Place,” at the Independent Living Center of the Hudson Valley (ILCHV)  in Troy dedicated to disability rights activist and leader Pat Figueroa, who passed away last April.  The event was wonderful and well-attended as the room was quite crowded by the time I arrived in the brightly lit lecture hall a minute or so after the presentation had begun.

     This arts event was a series lecture with readings from author and psychotherapist Harilyn Rousseau, who described herself as a “disabled feminist talking back” as she spoke of the new book she had written entitled “Don’t Call Me Inspirational.”  Actually, her lecture series was based on that very title and I became captivated with her the minute I sat down and began listening.  She read excerpts from her life growing up with Cerebral Palsy (CP) in a sassy, witty, and sometimes melancholy voice as she articulated the  societal limitations she had endured.  I could think of many adjectives to describe Ms. Rousseau…..spunky, witty, bold, bright…..yes, anything BUT inspiring!

     Ms. Rousseau explained her qualms about the term “inspirational” and the inherent demeaning value it held for her.  To illustrate verbally to us, she described an encounter she had at age 11 with a gym teacher when that word was first uttered to her.  Gazing at her with amazement in her eyes, the teacher loudly exclaimed words to the following effect: “OH, you got yourself washed and dressed all by yourself this morning-what a wonder-you are such an INSPIRATION!”  Well, the author could not help but think “For God’s Sake lady, I have been washing and dressing myself since I was freakin’ 4 years old!”  Of course she did not express her exasperation out loud, but internalized her sense of indignation.  She went on to explain that when people approached her with this “Inspirational” word later in life, it felt to her that this was their way of keeping her at a safe distance and not accepting her for what she was: an intelligent, capable peer who was just like them.  For her, if they took her in as an equal (like them), it created too much fear in their own minds and opened up their own vulnerabilities.  So calling her inspirational was more for the benefit of the speaker and not flattering for her in any way.  Hence, the title of her book….. I must say  that I thoroughly enjoyed her richly detailed, heartfelt, wonderfully written memoir.  Various themes from the book include struggling with an overly enmeshed but devoted mom who was disappointed in her daughter’s inability to walk “normally,” to a devious suitor who built up then simultaneously shattered her lifelong dream of becoming a Bride against the odds of her mom’s and society’s fears and prejudices.  Actually, in the case of the ill-intended “fiancé” who broke his promise to her after making her feel like the most desirable princess ever, she learned she was quite fortunate to not end up with this cad.  Actually, she came to find over time that he had betrayed her for reasons that had to do with his undesirable character rather than her disability, which had initially caused her much grief and pain.  In hindsight, she was quite lucky to land on her feet without him beside her.

     Ms. Rousseau closes her vignettes by explaining in her very unique and bold voice how she continually comes to see and accept the image in the mirror,  the same one she used to be ashamed and rejecting of.  I found her tales  entertaining and characterized by strength and endurance.  I drew a lot of hope from her richly woven life journeys….and no, I won’t call you inspirational Ms. Rousseau, but I will call you capable of provoking optimism and thought, and that is something we can all use, whether or not we have a disability!

     For more information or to purchase book, click on the following link: http://www.temple.edu/tempress/titles/2235_reg.html

The Cost of Exclusion

WilliamsBy Brad Williams
NYSILC Executive Director

June 14, 2011 (Updated February 7, 2013)

In July of 2010 Governor Paterson signed a series of bills into law to amend Article 15-A of the Executive Law which related to minority and women-owned business enterprise development and procurement. These new laws took effect in October of 2010 and were designed to increase opportunities for Minority and Women-owned Business Enterprises (MWBEs) in New York State to impact their ability to conduct business with State agencies in various aspects of their contracting. The rationale for the measure was based on a disparity study conducted in 2010 that found “statistical and anecdotal evidence” of significant racial and gender discrimination. The study was required based on amendments made to Article 15-A during the Pataki Administration. It was recommended that the State take “constitutionally compliant” action.

I am not aware of the progress of these new laws. I certainly hope that they end up having the desired impact. I am writing this opinion piece today to point out some of the law’s unintended consequences.

First some background. I am a person with a disability who in my work with the Independent Living network looks to address the significant and wide-ranging needs of people with disabilities. We are a significant minority, representing approximately 20% of the total population. Based on U.S. Census Bureau 2009 estimates, this would translate into 61.4 million Americans or 3.9 million New Yorkers. Why is it, then, are we constantly excluded from the table and often an afterthought? People with disabilities are all ages, races, cultures, and genders – can be on fixed incomes or wealthy, and are tax-paying citizens. As a group, we also experience one of the highest levels of unemployment in the country. For example, people with disabilities constitute 20.6% of the State’s population with national unemployment rate of 15.6% versus 8.9% for persons without a disability (March 2011). The situation is magnified when you consider that the percentage of people with disabilities in the labor force was only 21% versus 69.7% for persons without a disability (March 2011). NYSILC conducted a statewide needs assessment in 2012. Based on U.S. Census data, the employment rate of all New Yorkers with disabilities (ages 18-64) was 31.3%, compared to 72% for New Yorkers without a disability, creating a gap of 40.7%! In addition, the poverty rate of New Yorkers with disabilities in the same age group was 30.2% – about two and a half times higher than the poverty rate of New Yorkers without a disability (ages 18-64). If New Yorkers with a disability were a country, their rate would rank them 58th in the list of impovershed countires right behind Botswana! Given these facts, it is obvious that people with disabilities need employment opportunities too. Since some people with disabilities have to address access issues, they might pursue self-employment as an option, which provides more flexibility over work scheduling and promotes the use of technology and telecommuting. However, this would not exclude individuals from seeking inclusive employment in a more traditional and accessible work environment.

Second, our network is funded through the NYS Education Department. The SED commitment calls for 12% to be provided to minority-owned businesses and 8% of contracted services to be provided to women-owned businesses. What are the unintended consequences? Some newly issued RFPs that have the combined 20% MWBE requirement are getting no response. The RFP is seen as being too difficult to manage, especially those with limited funds. Was this really the intent of the legislation – to take 20% of small State contracts to the point of rendering them ineffective? Net effect – nobody wins. When the 20% combined requirement gets implemented in the next Statewide Plan for Independent Living (SPIL) cycle of RFPs, it will result in people with disabilities losing their jobs in order to provide business for certified MWBEs which may not even be conducive, consistent, or relevant to providing services to the target population. It will end up adding to the already high unemployment rate for people with disabilities. Since disability can impact anyone, and we are mandated to be peer driven and consumer-directed, we hire qualified individuals with disabilities. This includes qualified minorities and women with disabilities who could potential lose their job in the process. Can somebody please tell how any of this makes sense? Think this is just hypothetical? Since I have a contract, in preparation of the next cycle, one person with a disability has already lost their job due to a restructuring and a few of our consultants, some having disabilities, stand to lose our business.

Third, how were individuals with disabilities excluded from the MWBE opportunity? It is hard to say. I suppose the people involved in the process were just representing their primary interests. This includes the Governor at the time, David Paterson, who probably identified more as a person of color than as a person with a disability. He knew the value of the legislation, but like many…oops…just forgot about those disabled people. Here’s my solution, the afterthought that we often have to deal with. Amend Article 15-A to expand the definition of “minority” to include a new section 8 (e) for businesses run by “people with disabilities” consistent with the definition in Human Rights Law Article 15, Section 292 (21). This is at least a proactive response to rectify a contractual situation that while it is assisting some groups, has excluded a rather large minority group that is struggling with “mind-bending” statistics and realities that government just doesn’t seem too motivated to do something about.

The Middle Ages

Williams
By Brad Williams
Executive Director
NYSILC
           After numerous requests, I finally relented and joined the ranks as a card-carrying AARP member. As I begin to learn what special privileges this membership affords me, including all the perplexities awaiting me on the verge of being a decade or so away from retirement (hey…I already get the senior citizen discount at Dunkin’ Donuts by virtue of my graying hair), I was reminded of the importance of taking some time to discuss issues with specific groups, like young adults with disabilities.
            Seriously, it has been a very long time since I was a young adult. It seems almost a lifetime ago. However, I can remember myself struggling with career choices and the onset of a disability…pre-ADA and the existence of the Center for Independent Living (CIL) network. I recalled these thoughts while attending the Youth Power Annual Leaders Dinner in Albany. This event was part of their statewide conference. I was greeted at the door of the hotel and escorted to the elevator.  Then I was introduced to several young adult advocates and led to the specific table in the conference room that they had selected for me. A group of six young adult advocates from across the state eventually joined me for dinner. I was impressed by the way they introduced themselves and shared background information. Soon they allowed me to do the same and more; I was encouraged to expand the discussion when necessary (taking a break for appetizers) until we were set up for the main course.
            Even then, dinner would wait. I was their captive audience. They had me sufficiently engaged and it was now time to get down to the “meatier” issues. With the exception of one person at the table, employment was a real problem. I certainly had been aware of the lack of career opportunities and knew it was not easy for college graduates to obtain employment in their field. By relating their own experiences, they made me appreciate just how difficult the situation is for young adults with disabilities. This included a less than positive experience by one individual at his local Labor Department which lasted a total of 15 minutes. Despite being connected to the Navigator program, he ended up without any tangible employment opportunities and was never assisted with resume preparation.   Our talk then shifted to something that several of them had experienced problems with – Disability Services Offices connected with colleges. One actually had a very positive experience. He was one year away from graduation and credited his success with the attitude of the people working in the office. A second person had an acceptable experience. The other individuals shared their stories of how these offices had basically let them down and not accommodated their needs. They explained that these colleges (all community colleges) seemed to have difficulty understanding how to accommodate students with cognitive or learning disabilities.  Without the proper supports in place, they dropped out.
            I was stunned.  I had a cognitive disability as a college student, and by good fortunate received the additional support I needed because of a professor who cared. Dinner was an afterthought. We got up and went through the buffet line, and finished our conversation at the table. I heard them loud and clear. It would be a matter of what could be or should be done about these issues.
            Unfortunately, I had to leave in order to commute home. I thanked the group for their time and feedback on the issues. As I made my way to the elevator, a person stopped me. He was sitting at the table next to us and had overheard some of our talk. This young man had a similar experience at his community college. He had requested a testing accommodation that college staff agreed to, but never put into place. Consequently, his grades had suffered and he was now on academic probation. I sat down and discussed the matter with him. At this point, he really needed third party intervention. I pulled out my business card and wrote down the name and number of the director of advocacy services for his local center.
            What a disturbing trend! Just how pervasive is this problem? Is it isolated to the community colleges? What makes the difference between colleges that provide quality support services to students with disabilities and ones the drop the ball? Someone had to have more information on this topic. Did certain programs need to learn from best practices? Was there a need for legislation to rectify the situation, or did these individuals need to become plaintiffs? I left with far too many questions and very few answers.
            I know the next forum that I should attend…something on aging. I better get up to speed on the various issues crucial to senior citizens! It’s really not that far away. I will probably be one of those pesky seniors with a walker that has a horn on the side (beep, beep). And I thought that I was going to be able to retire in the next decade? The battle over the protection of our rights, our services, our voice…and maybe even our existence…is perpetual and crosses generations.