The ADA @ 25: The Work Isn’t Over

This past Friday night, local disability organizations and the Self Advocacy Alliance gathered for a celebration and concert in honor of the 25th Anniversary of the Americans with Disabilities Act (ADA). I was honored to be invited to attend the event and speak about the ADA prior to the band taking the stage. If you have ever been invited to speak before the entertainment at an event, you know the audience is really just being polite as they wait to listen to the music.

Friday night’s audience was wonderful. They were attentive, engaged and even applauded some key points! Someone asked if I would share my remarks on my blog. I usually don’t write out my speeches word for word, so the version I present is always a bit different than my notes. I’m not sure I said everything I wanted to say on Friday, but this is my best attempt to write down what I intended to say on Friday.

Communities across the United States are having ADA celebrations this month. Today is the first ever Disability Pride Parade in New York City. I wish I could be there with my friends who are traveling down the Hudson right now, but my recent wheelchair repairs made the trip impractical. I urge you to find out what is happening in your area, and learn more about what you can do to help further the vision of civil rights for people of all abilities.

The organizers of today’s event asked me to say a few words in recognition of the 25th anniversary of the Americans with Disabilities Act, or ADA. This important civil rights legislation, which was signed into law in 1990 by former President George Bush, changed life for people with disabilities in many ways. Improvements in everyday life are all around us.

This park we are in has accessible parking, curb cuts, and accessible rest rooms. There is a ramp on the back of this stage which made it possible for me to wheel up here.

Many of us used public transportation to get here today – buses with lifts or paratransit. If you travel to another metropolitan area in the United States, their buses will be accessible too. Within the past decade, I have visited Little Rock, Arkansas; Salt Lake City,Utah; Ames, Iowa; Long Beach, California; and Tampa, Florida. I was able to ride public buses in each location.

When I was in those cities, I stayed in hotels. All of the hotels were relatively new construction, built within the past 15 years or so. My hotel rooms had elevated toilets, grab bars, hand held showers, and strobe lights which flashed if someone rang the doorbell.

Access to technology has improved life for many of us who live with disabilities. Closed captioning for television programs, and live captioning Internet broadcasts or webinars mean the Deaf or hearing impaired can participate. Cell phones and texting put communication with others right in our own hands. Braille elevator key pads and ATMs with audible signals increase independence for the Blind and visually impaired.

I first came to Albany in 1991 when I started college at The College of St. Rose. I learned how to be an advocate while I was in college. The ADA was new – and it was widely thought this law would change the world for people with disabilities. We would have protections and legal recourse if we faced discrimination! Reasonable accommodation became the new buzz phrase for us.

I studied Communication Sciences and Disorders because I had decided I wanted to be a speech-language pathologist when I grew up. When I started college, the school had four residence halls which were accessible. The only buildings with automatic doors were the Campus Center and Albertus Hall, the main classroom building. We used the service elevator in the kitchen to get to and from the main dining hall. And the elevator in St. Joseph’s Hall, where the majority of professor offices were, had a gate you had to close before the elevator would move. Many times I found myself stranded on the third floor because someone had taken the elevator down to the first floor and not closed the gate. When my friends and I walked downtown, either down Madison or Western Avenue, we weren’t able to stay on the same side of the street because not every intersection had curb cuts on all four corners. So, we would zig zag downtown, crossing at certain streets so we would have access to the sidewalk. I never took a public bus until I started using STAR paratransit services in 1993.

I was fortunate. As a child, I had parents and siblings who told me time and time again I was capable, I was smart, I was competent – I could do anything I wanted to. I grew up knowing I would go to college and get a job. It was what was expected of me.

Sadly, that is not the expectation often held by others when it comes to people with disabilities. When President Bush signed the ADA, he said the walls of inequity for people with disabilities would come down. Many have – but there are many more which need to fall.

Just look at employment. In New York State, the percentage of people with disabilities who are working age (21-64 years old) who have full time employment lasting at least a year or more is 20%. Compare that to the percentage of their non-disabled peers – which is 56%.¹

Full time employment is not attainable for everyone for a variety of reasons. If we look at employment – full or part time – for working age people with disabilities in New York, the percentage increases to 32%. One third of working age adults with disabilities in New York have some employment. That may sound good until you hear that 76%, or three quarters, of working age non-disabled adults in New York are employed either full or part time.

Employment affects everything. And I’m glad the federal and state governments are trying to create policies which increase employment for people with disabilities. Without jobs, many of us wouldn’t be able to live where we live, or drive our own vehicles.  We wouldn’t be taxpayers with discretionary income. We wouldn’t have the sense of self-esteem and purpose many of us have gained by engaging in activities which provide value to ourselves and others.

The ADA has made it possible for musicians, like the ones you’re about to hear in Flame, to tour and pursue their passion. The ADA, through the Olmstead decision, has made it possible for people with disabilities to live in their communities where they belong instead of in nursing homes or institutions. Community based supports and services, like the Consumer Directed Personal Assistance I use every day, make it possible for people like me and you to live in their own homes.

But no law can ever legislate attitude change. It is up to all of us to continue to educate and advocate for our rights – to show others our potential so they realize everyone has value, everyone deserves respect. Whether or not we want to be, we are examples of what is possible. The adaptations and accommodations we demand improve not just our lives, but the lives of those who will come after us. I promise to continue speaking up for all of us, and I hope you will do the same.

Congratulations to all of you for being ambassadors for people with disabilities here in the Capital Region. Keep up the good work and enjoy the concert!

 

¹Statistics related to employment in other states may be found at http://www.disabilitystatistics.org. For this speech, I searched using results from the American Community Survey.

Redefining Disability Challenge – Question 15

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fifteenth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

What are the biggest challenges that you face in regard to disability?

One of the biggest challenges I face related to my disability is currently wreaking havoc on my personal life. So I thought I’d use today’s challenge to allow myself to rant about the difficulties involved with finding, and keeping, good staff.

I live independently in the community, in my own apartment, because I have access to home health care. I use Consumer Directed Personal Assistance (CDPA) which means I am responsible for recruiting, hiring, training, managing/supervising and (if necessary) terminating my Personal Assistant (PA) staff. Or, as I often say as part of my “paid schtick” while working, I am the CEO of me and I get to handle personnel.

CDPA is an alternative to the medical model of home care. Rather than a nursing agency sending staff to my house, I have control of who enters my house, what tasks they perform, when they work, and how the job is done. Without access to CDPA and the PAs who work for me, I would have no choice but to live in an institutional setting or rely on the regulations imposed by a nursing agency.

Instead, I manage a staff of six primary PAs and six back-up PAs. These women provide the forty nine hours of assistance I require each week to maintain my active schedule.

In essence, I work two full time jobs. There’s the paid gig I referred to before – forty hours per week for the non-profit organization that employs me. Then there are the forty nine hours per week I spend being the CEO of me.

Only for the past month I have spent at least ten additional hours each week recruiting, interviewing and training new PA staff. For many reasons (maternity leave, injury, family illness and death to name a few) my PA staff are dropping like flies. Right now, I only have five of my twelve local PA staff available to work.

I am extremely short staffed for my life, which means I am living in a constant state of high stress. Because being short staffed means:

  • I don’t know who will help me go to the bathroom after I get out of work tonight.
  • I don’t know who will help me go to bed tonight or tomorrow night.
  • I don’t know who will do my laundry and I only have two more pairs of clean underwear.
  • I don’t know if I will be able to cook the chicken in my refrigerator before it goes bad since I don’t know who is working for the next two nights.
  • I don’t know how I will get out of bed if my one remaining weekday morning PA has an accident or illness because my back-up morning PA is out with an injury.
  • I can’t even think about the weekend because I have to get through the work week.

OK, so I may be acting a bit dramatic. I have friends and family. Someone will come to help me go to the bathroom and someone will help me go to bed. I always find “someone.”

But the point is, right now, I don’t know who those “someones” will be. And it will take many “someones” so I don’t burn out the goodwill of the friends and family I have been calling on for the past month. And not knowing means I have to take time out of my life to plan. Which means I am not as attentive or productive at work, and I am not available for the volunteer service I enjoy. It also means every little annoyance bothers me ten times more than it would – like just last night when I cried because the new PA who has worked for me for two weeks was a no call, no show, and I just didn’t have the energy to find assistance at the last minute once again.

I could keep writing, but I need to go conduct phone interviews with two more potential PAs. With any luck, they will be available for some of the shifts I have open.

And I need to go find someone who will help me pee and go to bed tonight.

In the meantime, I’m hiring – if anyone has any good candidates to send my way…..

 

 

Six Days!

So, I leave for Australia in six days. SIX DAYS!!! Six days from the time this posts (about 10:15 AM EST Sunday) I will be on a plane somewhere over the Pacific Ocean.

I have been planning and talking about this trip since last June. I reserved a wheelchair accessible van – one of the only wheelchair accessible vans available to rent on the island of Tasmania – in August. I found a travel companion in October – thanks again Kelly! I created a crowdfunding site for fundraising in November. Thanks to generous support from friends, family and strangers, I finished my fundraising in December. I booked our flights and secured entry visas for Kelly and I in January. I started making lists in February – things to pack; tasks to complete before leaving; emergency contact instructions – you should see my lists! If I just get through this week….

My Personal Assistants have been very helpful, but the number available to work keeps dwindling. One is out on medical leave, recovering from surgery. Another was taken out of work by her doctor because of complications in her pregnancy. One had a car accident on Thursday and is without a vehicle for the near future. I had to terminate another one last week because she had not responded to my multiple attempts to communicate for ten days. I have no time to recruit or hire new staff right now. It will have to wait until I come back. I’ll be hiring in April, so if anyone knows of a potential applicant in my area, please send them my way. No experience necessary. Fringe benefits include cookies and the occasional opportunity to travel.

My suitcase for the trip is packed, and there is plenty of room for me to stash some Vegemite and real Cadbury for the return trip home. If you live in the United States and you’ve never had real Cadbury (as in, Cadbury made anywhere else but here) you’re missing out. I lived on Cadbury Twirls, Dairy Milk and Flake during my exchange year. I toured the Cadbury factory near Hobart four times during my stay. Each day at school, we would run up to the canteen on our break and stock up on chocolate bars for later. My friend Ulla and I would collect everyone’s money, then she would push my wheelchair to and from the canteen so I could carry everyone’s purchases. One day a concerned guidance counselor pulled me aside to ask if I was eating, whispering “You know, anorexia is very common in exchange students.” I had never heard that rumor. All the exchange students I knew, myself included, were packing on the pounds. Apparently, she had never seen me coming back from the canteen with a lap full of Cadbury bars. The Qantas weight limit is 50 pounds per bag. At this point, I can safely bring about 10 pounds of chocolate home if I wish and not have to pay extra in baggage fees.

My iPod is loaded with audiobooks. I have a new photo card for my camera. I have address labels printed for all the postcards I need to send. This week I will pick up the gift I am bringing to my host parents, who are letting Kelly and I live with them while we are in Tasmania. Today I am doing the final edit of the slides for my presentation – it’s why I’m going so I do have to make that a priority.

My cousin Jim recently compared vacation preparation and excitement to the anticipation of Christmas. If that is the case, I am getting close to Christmas Eve levels of excitement. Six days, in case you forgot!

Redefining Disability Challenge – Question 7

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the seventh question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

Is your work or school life affected by disability? Describe some of these challenges.

Last week I wrote about how my dependence on a publicly funded program for personal care impacts my financial situation and my ability to earn money. To answer this week’s challenge, I will write about my educational experiences as a student with a disability and how my professional choices have been influenced by my disability.

In the United States, all children with disabilities are entitled to receive a free and appropriate education in the least restrictive environment. I was one of the first students with a mobility impairment to attend my small hometown school. My parents advocated for my right to be mainstreamed, rather than receive my education in a self-contained classroom for children with disabilities. I received all of my education in the same classroom as my peers, with the exception of the classes I attended with the other students who were part of the gifted and talented program.

All students with disabilities have Individualized Education Programs (IEP). The IEP is the plan which contains the goals and objectives for a student. Because I had an orthopedic impairment, my IEP had goals related to my physical disability as well as my academic performance. The IEP is developed by the Special Education Committee – professionals involved in the education of students with disabilities.

When I was in eighth grade, my mother began to involve me in my IEP meetings. I read my IEP and the reports from the teachers, school psychologist and physical therapist. I attended some of my IEP meetings in high school where we discussed goals and objectives. Back in the late 1980’s, involving the student in what is now called “transition planning” was a new concept. Thankfully, more and more students are becoming involved in these meetings. My mother’s reasons for including me were simple – it was my plan, my education, and my future so I ought to have a say in the discussions. I remain eternally grateful for her early advocacy to include me in planning for my future.

From the day I started kindergarten at four years of age, I knew my parents expected me to do well in school, graduate, and attend college. There was never a question about my ability to do this.  I remember having a conversation about school with my father just before I stated second grade. He told me, “Denise, you’ll never be able to earn a living doing physical labor, so you have to continue to do well in school. Develop your brain so you can find a job where you can use your intelligence instead of your muscles.” Because my parents and teachers expected me to do well and continue my studies, I expected it for myself. Everything I did in high school was meant to prepare me for further education.

Early in high school, I began to explore colleges and universities. My grades and academic success meant several schools approached me but I was selective in my search. I wanted to attend a small liberal arts college where I would be able to make myself part of a campus community. I did not want to attend a large public university where I would be just a number. I needed to find a school where I would be recognized as Denise, not just another student in the back of a lecture hall. I also needed a small campus which was accessible.

The minute I stepped out of the car in the parking lot at The College of Saint Rose, I knew I had found my next home. At the end of our visit and tour, I told my parents this was the school I was going to attend. They were nervous, and asked how I could be certain when we hadn’t visited any other schools. But I knew St. Rose had everything I wanted. It was accessible, small, academically strong in my chosen course of study, and everyone we met that day had been friendly. I applied for early acceptance, not even considering a plan B in case they didn’t accept me. I was going to St. Rose.

Thankfully, they accepted me because I never did apply to another college before I left for my exchange student year. I started St. Rose excited to throw myself into the college experience. I took full advantage of the state vocational rehabilitation programs which offered assistance for students with disabilities. Book scholarships, tuition assistance, personal care assistance – all helped me fully participate in secondary education. I did not require classroom modifications other than the occasional assistance moving a desk or chair when I had to make a presentation. When it came time for me to complete my student teaching and clinical practicum, the placement office worked with me to locate accessible sites.

I have remained employed full time since completing my graduate degree in 1996. My occupations have always been tied to disability in some way. Disability is my life. My years working as a speech-language pathologist allowed me to help others with disabilities in meaningful ways. When I decided to leave clinical life, I tried cubicle work in an office. But I am too strong of an ESFJ personality to work in a cube farm.

My employment experience is not typical for adults with disabilities. According to the 2012 American Community Survey (the most recent data on their website) only twenty percent of non-institutionalized persons with disabilities aged 21-64 in the United States were employed full time for a full year. The percentage for women aged 21-64 years is even less – fourteen percent.

There are many reasons for the disparities but I am an outlier because those who influenced my education expected me to succeed. I wrote about this last year in a blog post for the US Department of Labor, Office of Disability Employment Disability.Blog. I was empowered by those who did not see my disability as an educational or vocational barrier.

I will continue to work as long as I am physically able. The financial realities I wrote of last week for this challenge limit my ability to accrue assets, making continued employment a necessity. My current job allows me to combine my passion and advocacy with my skills as a communicator. The taxpayers spent too much money getting me educated to have me stop working now after just twenty years! I owe it to them to use that education in an occupation serving others for as long as I can.

Redefining Disability Challenge – Question 6

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the sixth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

Are your activities of daily living affected by disability? If you’re comfortable, share a little of your daily routine.

I’ve written before about how my disability impacts my activities of daily living and my need to employ Personal Assistants (PAs). Last October I wrote a guest post for the AbleBodies blog describing how I “manage” living with my disability. The post is one of the most honest and blunt descriptions I have ever written about something many wheelchair users refer to as “pee math.” Please, click this link and read it now if you want to learn more. You can read about my daily routine in this post, and in this post you learn why I call myself the “CEO of Me.”

I don’t want to repeat what I have already written so I will use this week to speak about the financial reality of life as a person with a disability. I am writing from the perspective of someone who lives with a disability in the United States. I cannot presume to speak for others, and I am only presenting my experiences. I am not writing as an employee or agent of my employer, a nonprofit disability related organization. The views and opinions below are mine. The programs I am going to discuss are government programs, thus they have acronyms and abbreviations. I am using these, but I will define each of them.

To help explain my reality, it helps if I talk a bit about long term care (LTC). The United States Department of Health and Human Services has useful basic information about LTC on their website and it is written in plain language. You can find links to your state (if you are in the USA) and you can also find information about other topics such as considerations for LGBT adults and adults with Alzheimer’s.

LTC refers to the services and supports a person requires to meet personal care needs. This includes help with tasks known as Activities of Daily Living (ADLs) such as bathing, toileting and grooming, as well as tasks known as Instrumental Activities of Daily Living (IADLs). These tasks are the skills needed to successfully live independently, such as doing laundry, preparing food, shopping and housework. Since most LTC is related to assistance with ADLs and IADLs, it is not considered “skilled medical care.” Often this help is performed by unpaid family caregivers. According to the US Administration on Aging, unpaid caregivers provide almost eighty percent of LTC in this country. The average unpaid caregiver spends twenty hours per week providing this assistance. Twenty hours – it’s like having an unpaid part time job in addition to all your other work and family responsibilities.

There are several common misconceptions about who pays for LTC in the United States. Medicare DOES NOT pay for extended LTC. Medicare WILL pay for skilled nursing services, or rehabilitative care but generally only for a short period of time. Medicare DOES NOT pay for what is considered “non-skilled” assistance with ADLs or IADLs, which as I said before is the majority of LTC. Private health insurance, like the insurance provided by my employer, DOES NOT pay for extended LTC.

What pays for extended (longer than 120 days) LTC? Medicaid is the public option used by most people with disabilities. There are some public programs through the Department of Veteran’s Affairs or local Offices for the Aging which pay for LTC in certain populations. There are private options such as LTC insurance and annuities. I am not an expert on these and I encourage you to do your research if you feel these may be options for you as the rules for eligibility and cost vary. I know Medicaid as this is the program I have used since 2008 to obtain the services I require.

Medicaid eligibility is based on income. Each state administers Medicaid differently, so you must meet the minimum eligibility requirements in your state to qualify for services. I complain about the winter, snow and cold in New York often enough to cause people to ask me frequently why I don’t just move. The answer is simple. I stay in New York because of the relatively generous Medicaid program which pays for my LTC. I qualify for LTC through a New York State Medicaid program called the Medicaid Buy-In Program for Working People with Disabilities (MBIWPD). This program allows working New Yorkers with disabilities to earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage. Forty-five states have buy-in programs and the eligibility guidelines and rules vary by state. I will explain how I benefit from MBIWPD after I talk about Medicaid eligibility and how the rules force people with disabilities to live in poverty.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. That is a difference of $518 less per month, or $6,205 less per year, due to disability.

Let me repeat that so it’s clear. To qualify for Medicaid in my state, a person with a disability is allowed to earn up to $825 per month, $518 less per month than a person without a disability.  My rent is more than $825 per month. Let’s not even discuss food, the loan for my accessible vehicle, or any other expenses. I could not live the life I lead now on $825 per month. How would you survive if your income was limited to $825 per month? What changes would you have to make?

There is a reason many disability advocates talk about people with disabilities being forced by “the system” to live a life in poverty. For many, Medicaid is the only option. Medicaid pays for goods and services people with disabilities rely on and is often the only public funding source available to provide these necessary items. Living with a disability is expensive and most people would not be able to afford care without Medicaid. Have you priced wheelchairs? The price listed on the invoice for my power wheelchair, purchased in 2012, was $33,648. And my chair only elevates, it does not tilt or recline. It also doesn’t drive me to work, or protect me in a high speed crash, like a car at half that price would. I am authorized to receive 49 hours of personal care each week. If I were to pay out of pocket for this care, it would cost approximately $20/hour. That is $980 each week, or $50,960 a year. If you were dependent on medical equipment and personal care, would you jeopardize your eligibility for the program which provides these necessities? Or would you continue on just so you have access to required care?

People with disabilities become trapped in poverty because of another reason – the asset limitation. To qualify for Medicaid, a person cannot posses personal liquid assets of more than $2000. In my bank account, at this very minute, I have $789. If my accessible van breaks down tomorrow and requires any repairs, I have no choice but to put the repairs on my credit card and pay it off a little at a time because I have no access to a rainy day or emergency fund. In 2013, 29 percent of adults with disabilities lived in poverty – twice the rate of the general population. It is hard to break out of poverty if one is never permitted to acquire assets.

Earlier, I said I benefit from the New York MBIWPD. As a single person receiving services through this program in my state, I can earn up to approximately $59,000 annually (the exact amount changes each year and is different for married individuals) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy and Medicaid pays for the personal care I need to remain an active member in my community.

I am grateful to have a program like the MBIWPD but using such a program comes with trade-offs. Every six months, even though I’m not sick, I must appear in person in front of my doctor so she can make sure I’m still disabled and still require personal assistance. I have had a progressive neuromuscular disease since birth, but every six months the government requires my doctor to verify some miracle hasn’t happened which would eliminate my need for care. After my doctor verifies my continued need for home care, a nurse and social worker visit me at home to assess my ability to be self-directing and to determine the number of hours of care I require. I understand my care is paid for with taxpayer money, and there must be a system to ensure the funds are not used inappropriately. Forcing me to go to a doctor, and spend taxpayer money on a doctor visit I don’t need, particularly when my disability is not going to disappear, seems like a waste.

But I play the game because I need the assistance. I grit my teeth and smile at the nurse and social worker when they ask me patronizing questions (or call me inspirational) because they are the gate keepers. They determine how many hours of personal care will be authorized. That’s the reality I live with until the regulations change or until I come into an unexpected and extended windfall of money. I accept this is the way things have to be, and I just do what needs to be done. I am a single woman who was repeatedly told from an early age, “You’ll have to do well in school so you can grow up, get a good job and be able to take care of yourself Denise, without relying on anyone else to support you.” I followed those directions, went to college, got a Masters degree and have supported myself since 1996. Now, I work in a job which I enjoy, but where I earn significantly less than others with the same educational and professional background so I will qualify for the services I need. Do I like having to play the game? No. I continue to play because it’s the only way I can keep living the life I want to lead.