5 - What Can the DPN Do For You at the One-Stop Employment Centers
6 - A Friendly Reminder:
SSDI Work Incentives for 2006
7 - It’s OK To Be Disabled 8 - Coddling
10 - Helpful Resources
Our newsletter is dedicated to the memory of Ed Roberts, founder of independent living. Ed believed that disability should not limit an individual’s choice of lifestyle, occupation, marital status, or dreams and aspirations for the future. He believed that people with disabilities could best decide on their own what was best for them, despite many misconceptions society held. He dreamed that one day people would see the fantastic things we in the disability community were capable of and a tremendous liberating change would take place. Ed envisioned a future world of equality, acceptance, tolerance, and opportunity!
In keeping with the spirit of Ed’s vision of social liberation and equality for people with disabilities we are focusing this newsletter on transcending disability stereotypes and undoing institutional bias.
Consumers who come to Westchester Disabled On the Move must know that we have a mandate to provide consumers with choice. Consumers can accept services that are suggested by our counselors, or go their own way. We have found through experience that consumers who consistently follow our suggestions are able to navigate the system and obtain the core services. These include benefits assistance, vocational referral, and ongoing peer counseling—getting a consumer in touch with his or her disability. Our Life After High School Program is giving young consumers an opportunity to get the head start they will need to build a bright and independent future. The Housing Options Program assists consumers with economic barriers. WDOMI is vigilant in seeking and fighting for rent subsidies that are both scarce and in high demand! Despite this tremendous barrier, many of our consumers have found accessible places to live with a subsidy, even if it took time and persistence to do so.
In order to obtain positive outcomes, it is often very useful to set up an independent living plan. This plan is a concise outline of what the counselor’s responsibilities are to the consumer in relationship to the consumer’s ultimate goal. In turn, the plan asks consumers to take specific steps to achieve the goal they are pursuing. Once the independent living plan is drawn up and followed step by step, very positive outcomes follow!
The following newsletter will provide you with insight into how to make your dreams a reality. Each of the following articles is written by our professionals. They themselves have a disability they have learned to live with, by overcoming barriers encountered. We are experts, as the result of our struggles with the system, at providing core services to assist you in overcoming barriers caused by our society’s bias toward disability. I hope you enjoy this special edition of On the Move.
Nursing Home Transition and Diversion Coordinator
Gail Cartenuto - Cohn
Gerald J. Sullivan
Treasurer Sandra Dolman
Anna Fay William Frumkin, Esq.
Marlene Perez Mattie Trupia
Mauren Keating Tsuchiya Tyrone White
Executive Director’s Report
The publication of this newsletter gives me an opportunity to reflect on the accomplishments of our Independent Living Center and how they relate to the Center’s Mission Statement. The Mission Statement is more than an attractive plaque on the wall, it is our philosophic approach to services and advocacy. What is this mission statement:
· Empower people with disabilities to control their own lives
· Encourage people with disabilities to participate in the political process
· Educate government, business, other entities, and society as a whole to understand, accept, and accommodate people with disabilities
· Create an environment that inspires self-respect.
Mission (partially) Accomplished!!!
I couldn’t presume to state we have fully accomplished our mission. When we have reached this ideal future, I can retire.
How have we empowered people to control their own lives? I think the program that has contributed most to this goal is our Nursing Home Transition and Diversion program. Nothing is more empowering than being able to live in the community of one’s choosing. In the last year, we have assisted many individuals in getting out of nursing homes or preventing their admission into institutions. The greatest barrier here in Westchester continues to be the lack of affordable and accessible housing options. If we had more housing resources we could have helped twice as many people.
So, how about advocating for civil rights and a barrier free society? Advocating isn’t always glamorous; it is often tedious hard work. Our greatest accomplishment this year is the progress we have made in the County in ensuring the most fundamental right, the right to vote. Three years ago before WDOMI and other organizations sued the County and others for failing to provide equal access
to the polling places to people with disabilities, less than 20% of the county’s polling sites were accessible. Within the next two years we expect that 90% will be fully accessible. Honestly, if I never survey another polling site and write up another report it will be too soon. However, I believe that the drudgery will be worth the effort when we can all vote independently and privately.
Are people with disabilities participating more in the political process? My answer is a resounding yes! Speaking as part of a state-wide systems advocacy network we have achieved many goals. As I am sitting here writing this I just received word that an important Civil Rights Bill passed the NYS Senate after struggling to get it passed for at least 5 years. Kudos, to WDOMI’s 2006 Spirit of Independence Award recipient, Senator Nick Spano, for being the primary sponsor of this legislation and shepherding it through the Senate. S. 5074 takes the federal language from the ADA prohibiting discrimination by businesses and other places of public accommodation and inserts it into NYS Human Rights Law. We would have never accomplished this if people with disabilities weren’t getting more involved.
Is the public more educated about the rights and desires of people with disabilities? Thanks to the editorial and news coverage of our local newspaper The Journal News, we have gotten the word out about critical issues facing our constituency. Reporters like Len Maniace and Elizabeth Ganga and editors like Ron Patafio have facilitated our getting the viewpoints of disability advocates and consumers to the public.
How does a Independent Living Center inspire self-respect? By engaging the consumer in being an active partner to achieve their own goals we help the consumer get a sense of accomplishment. By doing with, rather than doing for. We also encourage people to identify themselves by their abilities not by their shortcomings, and to be proud of their accomplishments. If you don’t feel you have been treated as an equal who is respected by WDOMI staff, please let me know.
In closing, I’m wishing all of you a happy Disability Awareness Month.
Melvyn R. Tanzman, CSW
Becoming An Advocate
This issue we are focusing on employment and the issues that arise for people with disabilities who are both searching for a job or trying to keep one. I spent over two years trying to find employment. The whole process was incredibly frustrating. A girl can only take so much rejection. The only way I was able to break my own cycle of unemployment was continuously going to interviews and persistently advocating for myself to ensure that I was receiving all of the assistance and resources available that I was entitled to. This meant being vigilant about following up with those who were trying to help me and never waiting until they thought to call me on their own. There are so many obstacles in our way when it comes to seeking employment; we must be our own best advocates.
For this reason, I would like to talk to you about advocacy. You may be wondering what it means to be an advocate. Well, it means standing up and speaking out to those in power, for that which is right and that which we need and deserve. In practice, I work alongside a network of fellow advocates throughout the state toward a common goal. We call, write and, on occasion, meet with legislators to make our voices heard and, hopefully, to effect change. We advocate for a broad range of issues. These issues include our civil rights, as with the Help America Vote Act, which is meant to ensure that all Americans have a private and independent vote, a right that has been denied to a broad range of us who are disabled. Housing is another issue where the needs
and rights of people with disabilities are ignored, and we will be fighting for those rights.
Of course, the aforementioned topics only begin to scratch the surface of policy that needs to be, and will be advocated for. The more voices in the choir, the stronger we are. This is where all of you come in. I am looking for volunteers to join me, as well as the rest of advocates statewide fighting for our rights. Some of you are already involved in advocacy work but we always need more people. It is incredibly empowering to make your voice heard and to fight the good fight.
Whether it be searching for a job or working to ensure our civil rights, we all need to know how to advocate for ourselves. While there are a lot of services out there, we all need to know what they are and how to make those services work for us to realize their full benefit. This goes to the heart of what it means to advocate for ourselves. It would be great if you could take that one step further and join us in advocating for people with disabilities as a whole as well. Throughout the history of our country citizens’ rights have not been bestowed benevolently by the powers that be, it has been fought for by advocates, by concerned citizens. One thing history can teach us. Though, is how much can be accomplished when we join together for a common goal.
Are you interested in volunteering at WDOMI?
Please contact Claudia Slater
at 914-968-4717 ext. 21
With much better heath care at home, a former nursing home resident is now On the Move to resume a normal life in the community of her choice.
By John Strothenke
TY is a licensed social worker who contracted progressive Multiple Sclerosis several years ago and ended up in a series of nursing homes. Prior to her disability, she worked for many years assisting people from all walks of life in sorting out problems and teaching them how to navigate the system. Many of her consumers identified their problems through her counseling, and ultimately moved in a positive direction to face their problems and overcome barriers achieving their goals. TY was an excellent social worker who never in her wildest dreams thought that she would have to become a consumer in need of counseling services herself!
After many years of maltreatment in the nursing
home which resulted in severe problems of dehydration affecting her digestive system and ultimately putting her on a feeding tube, TY enlisted the services of Westchester Disabled On the Move. Last summer the nursing home transition and diversion coordinator requested the social worker at Beth Abraham Nursing Home in the Bronx to set up a discharge plan. The nursing home transition coordinator assisted the so
cial worker with this plan. On a daily basis, he and TY worked diligently to achieve her dream of living on her own in an apartment in White Plains. This was no easy task. TY had to accept the role of consumer for the first time, but did so whole-heartedly and followed the directions of the coordinator’s independent living plan.
By doing so, she now lives in her own apartment with the assistance of the consumer direct personal assistance program. She has two aides 12 hours a day to assist her with activities of daily living (ADL’s) so that she can live a normal life outside in the community of her choice. TY is very happy now that she’s no longer a resident of Beth Abraham. With much better heath care at home, TY now receives one-on-one personal care and is monitored closely by her aides, so that dramatic problems like the one that led to her dehydration will never happen again. What’s more, TY is now On the Move to resume her career as a social worker. She wishes to assist others with similar disabilities to avoid going through the ordeal of institutionalization by getting them in touch with long-term community supports.
What Can the DPN Do For You at the One-Stop
The Westchester/Putnam One-Stop Employment Center(s) welcomes the Disability Program Navigator (DPN).
The DPN is a person located at the One-Stop to assist people with disabilities seeking employment. The DPN is available by appointment to assist people with disabilities “navigate” the complex One-Stop system to ultimately find gainful employment.
What can the DPN do for you?
• One on one job readiness assessment
• Refer you to an agency specific to your disability that can help you become job ready
• Make recommendations about which job-readiness or skills workshops offered at the One-Stop can best suit your needs
• Connect you with employers
• Advocate on your behalf with employers
• Refer you for Social Security benefits planning when you go to work
• Work closely with you and your VESID counselor to ensure satisfaction and gainful employment
• Work together with you and your One-Stop Employment Counselor to ensure you are getting your needs met
• Be your support person while using the One-Stop services
The Westchester/Putnam One-Stop Employment Centers are located in White Plains, Mt. Vernon and Carmel.
For more information, please contact:
Sherry DeFrancesco-DPN at 914-968-4717 ext. 19 or E-mail email@example.com.
A Friendly Reminder:
SSDI Work Incentives for 2006
On January 1st 2006 the new numbers came out for consumers who are on Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). As you may know, consumers that are in Title II benefits SSDI get a non-consecutive nine month Trial Work Period (TWP). According to the Social Security Administration (SSA), when an SSDI beneficiary starts working, any month when a person earns over $620.00 is considered a successfully completed TWP month. The consumer can make as much money as he wants and keep his SSDI check and his paycheck during the Trial Work Period.
At the end of the TWP, SSA will call him in for a review of his earnings. At that point, a Social Security liaison will look at the SSDI beneficiary’s earnings in three terms: a. Is it Substantial Gainful Activity (SGA), which, in 2006 is $860.00 ($1,450.00 for the blind) or more per month?; b. Has the person utilized their full TWP?; c. Is the person still disabled? SSA defines disability on page 17 of the Social Security 2006 Red Book: “The inability to engage in any substantial gainful activity (SGA) because of a medically determinable physical or mental impairment(s): that can be expected to result in death, or; that has lasted or that we can expect to last for a continuous period of not less than twelve months.”
For example, if the beneficiary is earning SGA in the ninth month, he has three more months, one cessation and two grace months known as the Grace Period, to make as much money as he wants and still receive an SSDI check. After that time, the beneficiary will not be entitled to a check in the following month.
At the conclusion of the nine month TWP, the SSDI recipient will be in the Extended Period of Eligibility (EPE). During the thirty-six month EPE, SSA looks at whether the consumer is engaging in SGA, which is earnings of $860.00 or more. During the EPE, for the months the beneficiary makes over SGA, he will not be entitled to an SSDI check. However, the months that he makes under SGA, he will get an SSDI check.
After his thirty-sixth month, if the beneficiary makes over SGA, he is taken off the rolls and will no longer receive SSDI checks. However, should the recipient stop working or lose his job, he may ask for an Expedited Reinstatement of Benefits (EXR).
If the Beneficiary asks for EXR, he will receive six months of provisional benefits. During this time he will get his full SSDI check. While he is receiving the provisional benefits, SSA will make their determination on whether he is still disabled or not. If SSA decides he is not entitled to receive benefits at that time, he will stop receiving the provisional SSDI checks and Medicare, though he will not be responsible for any overpayments for the provisional benefits. If the SSA decides the beneficiary is in fact disabled, then a new TWP, grace period and EPE are awarded. He will receive a new date of entitlement.
While Social Security’s work incentive rules can be intimidating, BPAO staff are available to analyze your individual circumstances, and to assist you with maximizing your benefits and income.
Scott Barber, Benefits Specialist
It’s Ok To Be Disabled
In my capacity as Coordinator of WDOM’s Life After High School Transition Program, I have learned one very important thing: kids don’t want to be labeled disabled. A Special Education Department head once told me that “the kids don’t want to meet with you or be involved with your program because they don’t like the term “disabled” in your agency’s title. During that conversation, the department head said “the kids want to be seen as normal; they want to fit in with their peers.” “They don’t think of themselves as having a disability “To them, a person with a disability is someone who uses a wheelchair or is blind.” While I can certainly understand this viewpoint, I think these kids are being placed at a disadvantage. At an early age, Special Education students need to be made to understand that they are disabled and there is nothing wrong with having a disability. The system should address this issue at the beginning. If all kids were taught about disability and especially hidden disability, as part of their early education programming, we’d have an overall better understanding about people with disabilities in general. Thus, in turn, individuals with disabilities would have a better understanding of themselves and a stronger self-esteem.
The more we know about disability and the more accepting we are as a society of people with disabilities, the stronger our society becomes. Attitudes can change and, eventually, barriers eliminated but we won’t know how early education about disability will affect change until we teach future generations about disability.
You as a parent, educator, or school personnel might ask why is it so important for our kids to identify as having a disability. Well, no one has to identify. There is no law that requires people with disabilities to carry identification revealing their disability.
Identifying, or at least understanding when it would be appropriate or beneficial to identify, becomes important if that person will need accommodations and supports to live independently in their community as an adult. Most special education students will need some level of support upon leaving the school system. We need to give these students every opportunity to actively participate in the development of their lives as adults.
We need to dispel the notion of having a disability as something negative. Labels are used all the time to describe people from every walk of life. We need to put labels in perspective and recognize that they don’t mean much. Labels don’t describe the person or their capabilities.
There are a myriad of programs and services available to assist individuals with disabilities toward obtaining employment, housing, benefits and other services. Many parents and students are unaware of these programs and services. For example, the services offered through VESID. They don’t know what the agency does or how it might benefit them. While we inform students and their families about the services offered through VESID and encourage seniors to apply early in their senior year, more needs to be done to ensure that all students who can benefit from these services are made aware of their availability and how they can benefit. We need to give all children with disabilities every opportunity to integrate into society and participate to the best of their abilities. Let’s give them the tools they need as early as possible to allow them to live as independently as possible as adults.
Life After High School Transition
An Impediment to Employment
A Nightmare for Persons with Disabilities
The readers are probably well aware of some of the impediments to employment that people with disabilities face as they make an attempt to re-enter or enter the workforce for the first time; these impediments can be outlined as follows: Lack of transportation; lack of education and training; the bureaucratic maze of the vocational rehabilitation system; the very real fear and uncertainty of “will I lose my benefits” such as, SSI/Medicaid if I choose to go to work; what this writer calls “Persistent Adult Coddling of individuals with disabilities”. This impediment to employment and independence is a subtle issue not addressed very often by the person with a disability or family member or professional trying to assist a person with a disability to return to work.
Just what is Coddling?
Webster’s New World Dictionary defines coddling as: “the care of children.” This will fit very well with the rest of my discussion throughout this article.
Most, if not all of young Americans have been socialized to understand that work is an integral part of what will be expected of them as a contributing member of a growing society. I worked in my parents’ bar when I was 18 and probably earlier carrying beer bottles and setting the tables for drinks, etc. I remember even drawing beer for people. My mom, a single mother until 1968, instilled in me what today may appear an old-fashioned and outdated work ethic and an obligation to take responsibility in all areas of life. What makes this significant is I was born with Cerebral Palsy. This fact is not of real significance to me, were it not for the reactions of our society to people with severe disabilities. I have observed the phenomenon of persistent adult coddling as I attempted in later years to enter the social work profession in the mental health system. There is a reason for over 70 percent of qualified people with disabilities experiencing chronic unemployment. I believe that persistent adult coddling by potential employers is one contributing factor.
Coddling As a Societal Phenomenon
The concept of coddling people with disabilities goes back as far as the time of man or woman. The Bible speaks of the lame/blind needing to be taken care of and/or protected from the mean old world. I remember one of my first job interviews that took place in Spanish Harlem. I was applying to be a social worker for kids with emotional disabilities. A supervisor younger than me proceeded to ask me “won’t you lose your disability check, the government won’t take care of you if you work?” I told the gentleman that I was insulted. I had come from Rockland County and would not be insulted this way. He should have treated me like all other candidates or told me to leave immediately!
Because our society tends to view the disabled as less than equal it gives a message that we must be taken care of. Therefore, many parents, employers, and rehabilitation counselors will coddle us. They believe we are not able to emotionally or physically handle the demands and responsibilities of adulthood. This includes employment, parenting, and participating in our communities.
What Coddling Looks Like
I consider I am being coddled when people run interference for me, assuming I will not be able to handle a situation. I consider it to be coddling when a very bright graduate student has to have his/her parent call his/her supervisor to inform him that they do not feel that a certain field assignment is appropriate because the individual is too disabled. To make matters worse the student’s school legitimized this position saying the student does not have to do anything they don’t feel comfortable with. As someone who’s been working as a social worker for 15 years I can tell you with absolute certainty that an able-bodied student would have been reprimanded for this action. The school participated in this coddling phenomenon.
What Should We Do About Coddling?
· Parents and teachers must expect that young people with disabilities be age appropriate and responsible for themselves.
· Parents must instill a sense of responsibility in their children.
· Employers must examine their own attitudes towards people with disabilities in a real no-nonsense kind of way. If possible, Human Resource professionals, employers and supervisors should receive disability sensitivity training from professionals with disabilities.
· Mentoring services must be available to adults with disabilities who are bright but do not have the social skills to handle employment on an ongoing basis.
The Role of an Independent Living Center in Fighting Coddling
The Independent Living Center can assist you by helping you define your own person- centered goals and abilities. We help people identify themselves by their strengths rather than their deficits. As WDOMI’s mission states, we “create an environment that inspires self-respect.” If you feel you are being “coddled” or discriminated against by your family, your school or an employer, ask us to mediate the situation. We can educate significant others, educational institutions and employers with your assistance.
Scott Smith, Program Director
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