The new year

Well 2011 was a real bad year and 2012 was a tense year. So I don't know about 2013 what do you all think? I hope we can get this discussion going? Happy new year.

The Patient

I often do interviews and I interviewed a lady last week who referred to me as a patient and asked me if i had any other patients in the house? I responded by explaining that I am a person and not a patient. The philosophy behind this is that my disability comes after my person. Do others have similar experiences?

EDI Board and So Much More

Yesterday, CIL helped me with my redetermination for medi-cal, medi-care. They also helped me with social security. These two issues are very complicated and can be equated to at least four nervous breakdowns...Life is so complicated right now. I am so ass-broke I could scream. But they say things always turn around. I need to meet new people...I am getting out of an 8 year relationship and I can't pay the rent. I need donations of, unfortunately, money. I do have a non-profit, but I need a board.

Last night was strange. My overnight attendant called in sick and the board meeting at EDI went very well. I didn't realize it was going to rain for so long, but it is. These cuts are really making people afraid because of the institutionalization threat that we all could face.

Our Perpetual Responsibilities of Advocates with Disabilities

We have to find a way over the coming years to:

• enforce the ADA and Olmstead Act (secure funding)
• demand better enforcement of public transportation services
• close down the nursing homes, except for those who wish to be there
• improve the wage of personal assistant services and the quality of care received by the clients
• find more accessible affordable housing
• enforce the Air Carrier Act
• give all healthcare services free to low-income people and people with disabilities
• start small businesses or customized employment and improve higher education
• provide more public education for those who need it
• make disability studies a major in all universities, public and private
• better train people on assistive technology and devices
• teach people how to navigate through the benefits system
  
• have action teams set up to deal with any situation for persons with disabilities
• more community involvement and more sensitivity training

Trying to get a Bite of the American Pie

Across the country millions and millions of people with disabilities want to work and have the skills and education to do so but are being forced to choose between work and Medicaid benefits. According to the Bureau of Labor Statistics, 14.8% of people with disabilities are not employed in this country.

With the American economy in shambles and the federal government trying to revitalize the economy, it would be in their best interest to bail out not the auto industry, not the banks, but bail out the thousands of people with disabilities who want to work but cannot. Those people should be given free educational opportunities and housing with career incentives for them to be able to support their own services and needs. Social Security would be less of a long-term problem because more people would be paying into the system. The horrible conditions of states would be improved, and the U.S. deficit could be reduced. Statistically, it has been proven that disabled people who work are reliable, productive workers who work for longer periods of time. This is because they are able to get a sense of self-worth, a sense of pride, and full inclusion into our society. Full inclusion of people with disabilities in our society has been a law that federally is an unfunded mandate since 1999 supported and committed by the Obama administration.

Too many times, there are employers who are told not to hire people with disabilities because of the costs surrounding the Americans with Disabilities Act (ADA) and having to reasonably accommodate the individual. This is a bad myth because not only is the ADA there for employees with disabilities, but also gives employers creative ways to accommodate people with disabilities very economically.

People with disabilities who start their businesses are running into the same problems as the rest of America struggles with paying taxes, higher workman’s compensation rates, and a general decline of customers as a result of not having enough money. The Obama administration seems to mumble on and on about reinvigorating small businesses and getting people back to work. We must remember that people with disabilities could help reinvigorate the economy if we can get rid of all of the disincentives that get in the way of workers with disabilities. People who need job skills or higher education should get these amenities with the understanding that when they start making money the U.S. government also makes money. I have friends who I know across the country that have jobs and work, and they are constantly bombarded with meaningless redetermination for their benefits, despite the fact that these people are permanently disabled and just want to do their job. I happen to be one of those people. As disabled people’s services get cut back and they begin to lose the quality of life worth living, they begin to lose hope.

As I sat down at the Thanksgiving table this year and looked at the pie on the table, I could not help thinking to myself about all of the graduates I know from UC Berkeley who don’t have jobs but have unbelievable skills in all areas, including economics, genetics, law, public policy, art, writing, playwriting. I hope my words have demonstrated my severe frustration with the American Dream for people with disabilities and how they miss out on the taste of the American pie. We have a lot to be thankful for, but we all have a long way to go.

Nicholas Feldman resides in Berkeley, California with his fiancée. Nicholas received his B.A. and minor from UC Berkeley and currently runs Dare to Dream Attendant Services, a home care service that provides in-home care to all people with disabilities.

Public Advocates: Do they help or do they hurt?

Having a disability and having to navigate through the systems of Medicaid and Social Security almost always brings people with disabilities to a point where an Independent Living Center (ILC) is necessary to navigate through information requested by our government in order to maintain appropriate benefit status.

In a world where the economy is in the toilet, people with disabilities are feeling this also, from threatening cutbacks to Medicaid services and Social Security. Of course these cuts are targeted at people with disabilities who are on a fixed income and could work if given the proper information and assistance. Every ILC will pledge to have benefits counselors, information referral specialists, technology assistance, and independent living skills training. When the dust clears from the person getting to their local ILC, they are disappointed because the person who is supposed to help is overwhelmed, underpaid, and sometimes even undereducated. They tell people myths that if you work, you will lose your benefits, so just sit back and collect their benefits and do nothing. When people with disabilities find themselves face to face with an advocate, the advocate will typically meet with the person and basically make the person do all of the legwork (pardon the pun). It seems to be that the only way people get this solved is not with the help of the advocate, but eventually the perseverance or severity of the situation.

Almost every ILC that I’ve been to had a job placement counselor, but they just make people look through classified ads, fill out a master application for employment, and send them on their way. They do not prep people with disabilities for interviews, call potential employers, or, most importantly, tell people with disabilities their rights to work. People in today’s world need to be able to work now. In my past I’ve had people tell me “Oh, we will not have any job placement counseling available for two years.” They just said that my disability was severe, and what job would I get if I need a personal attendant? They never told me about work incentive programs or other resources that would have been helpful in obtaining a job. Typically, it is assumed that disabled people don’t want to work because of the lack of incentives and the threat of losing benefits, or even housing. Advocates need to stand up and realize that people with disabilities need to work now, and that legislation needs to be put through so that people’s benefits are not interrupted by constant threats to loss of benefits and loss of Social Security. I do believe that if someone is making over $80,000 a year, they have every right and responsibility to help pay for their care, but should be able to buy in to their benefits. These days, some advocates just seem to want statistics and not really help the clientele that they serve. It is important to recognize that ILC’s are drifting away from the reality of what people with disabilities really need. There is no more funding for peer support and horrible cutbacks across the board in the State of California and other parts of the country as well. I guess it’s time for advocates to look at themselves and say “Advocates: what are we good for?” I will hope the answer will not be “absolutely nothing.”

Nicholas Feldman resides in Berkeley, California with his fiancée. Nicholas received his B.A. and minor from UC Berkeley and currently runs Dare to Dream Attendant Services, a home care service that provides in-home care to all people with disabilities.

For all those who have not been listened to

Please Listen ~ a poem by a survivor

When I ask you to listen to me and you start giving me advice, you have not done what I asked.

When I ask you to listen to me and you begin to tell me why I shouldn't feel that way, you are trampling on my feelings.

When I ask you to listen to me and you feel you have to do something to solve my problem, you have failed me, strange as that may seem.

Listen! All I ask is that you listen. Don't talk or do - just hear me.

Advice is cheap; 20 cents will get you both Dear Abby and Billy Graham in the same newspaper, and I can do for myself; I am not helpless. Maybe discouraged and faltering, but not helpless.

When you do something for me that I can and need to do for myself, you contribute to my fear and inadequacy. But when you accept as a simple fact that I feel what I feel, no matter how irrational, then I can stop trying to convince you and get about this business of understanding what's behind this irrational feeling.

And when that's clear, the answers are obvious and I don't need advice. Irrational feelings make sense when we understand what's behind them.

Perhaps that's why prayer works, sometimes, for some people - because G*d is mute, and he doesn't give advice or try to fix things. G*d just listens and lets you work it out for yourself.

So please listen, and just hear me.
And if you want to talk, wait a minute
for your turn - and I will listen to you.

by Author Unknown and adapted by A.E.S.T.