An Open Letter to Mothers of Disabled Children

by Erin Andrews, PhD  —  Disabled Parenting Project (www.disabledparenting.com)  

 Erin Andrews serves as a parent advisor and co-researcher for the DPP. She is a board certified rehabilitation psychologist.

As a disabled mother, I can’t help but reflect sometimes on my own entrance into the world. As a member of several online (primarily nondisabled) parenting groups, I find myself triggered by social media posts about babies born disabled or young children being diagnosed with disabilities. As a way to process my own emotions, I decided to write this letter. It is a letter I wish my own birthmother could have had, and I something hope new mothers of disabled children will read.


Dear Mom,

I know you’re confused and scared. I don’t look exactly like you expected. The doctors tell you I’m deformed, that I’m defective. You are supposed to be devastated. Don’t be. Look at me – touch me. Suspend judgment while you explore my tiny new self. Notice how the contours and folds of skins are uniquely mine. I came from you – you made me, and I’m perfect. 

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From Norman’s Desk – February 2019

Norman A. Smith, Associate Executive Director

Thousands of people with disabilities turned to YouTube and Facebook at 3:00 pm on January 15 this past month to watch history. A piece of civil rights legislation reintroduced on that day to the 116th Congress to fight for the independence of all people, but especially people with disabilities and senior citizens.

The Disability Integration Act — originally introduced in 2016 by Sen. Charles E. Schumer, D-N.Y., and F. James Sensenbrenner, R-Wis. — prohibits states or local governments that provide institutional placements for individuals with disabilities who need long-term assistance, and prohibits insurance providers that fund such long-term services, from denying community-based services that would enable such individuals to live in the community and lead an independent life.

Without this in place, people who are eligible for services could be forced into nursing homes or other institutions by their insurance. This legislation ensures that disabled Americans have a right to live and receive services in their own homes.  It prevents people with disabilities from being forced into expensive institutional settings because of government regulation.

The Disability Integration Act also requires public entities to address the need for affordable, accessible, integrated housing that is independent of service delivery.

Watch parties were held at Centers for Independent Living and other advocacy genies throughout the nation. One was held in my office.  We came together with excitement and a tremendous determination to get the D.I.A. passed in the 116th Congress.

A little historical perspective.  The D.I.A. was crafted from 25 years of work dating back to the signing of the Americans with Disabilities Act.  The original legislation was first introduced by Speaker Newt Gingrich (R, GA).  Yes, the stalwart of Conservative value and fiscal policies first introduced the basis of today’s D.I.A..     Gingrich saw the value of keeping people with disabilities and seniors out of nursing homes.

Unfortunately, today’s Speaker of the House, Nancy Pelosi (D, CA), has ignored requests for two years to   become a co-sponsor of the D.I.A. Yes, this champion of Liberal ideas and fiscal policies and her immediate party subordinates have shamefully not responded to the disability community’s requests.  This is the same person who lauded people with disabilities who put their bodies on the floor to stop the repeal of Obamacare.

My point is the Disability Integration Act cannot be looked at through Liberal or Conservative perspectives.  It has an elements of both because it saves taxpayers and insurance company’s money while keeping people living with both freedom and support.

So far, three of New Jersey’s congressional representatives have signed on as co-sponsors. They are: Sen. Cory Booker, Rep. Bonnie Watson-Coleman, and Rep. Donald Payne.  I hope to name more next month as I use my personal Twitter account to “recruit” co-sponsors from our state. 

There is great expectations that the D.I.A. will pass this year.  I expect passage in the House but not in Senate this time, but we shall determine if grassroots advocacy by people who cannot walk, talk, see, or hear works again!

Norman A. Smith
Follow me on Twitter @normansmith02

 

“My Two Cents” – February 2019

So, last month I talked about the scams that are often put upon the disabled and senior communities, and I would like continue that dialogue.  By the way, these don’t only apply to seniors

Tim Doherty, Executive Director

and disabled people; they apply to everyone, and they come in a variety of methods and modes.

Phone Calls:  You may get a call from someone who says they are from Microsoft and have received an alert from your computer that you have a virus, and they want to get your password so that they can fix it.  So, you give them your password and all of a sudden nothing works on your computer,  or, worse, they now have access to all your data on your computer like other passwords, maybe credit card numbers, or social security information.  Usually, legitimate computer agencies do not call you, YOU call them.  Hopefully you contact the phone number of the real organization for help, which can be verified before giving out information.  By you making the call, you helpfully have verified the legitimate contacts for Microsoft ( or whoever ) to address your problem.  Furthermore, if you have been using your computer and haven’t had any issues, chances are the call you got was bogus.

Also, some callers will say they are from IRS or some other company and that you are past due on your bill, and so they are willing to take a payment over the phone.  Never give Credit Card numbers information over the phone unless you have already verified the number and agency.  IRS will NEVER call you, they do everything through the mail; so if someone says they are from the IRS, hang up immediately.

Computer messages:  Again, you may get an email that looks like it comes from Apple or Microsoft, and it may say that you have won a free computer; and in order to get it, you just need to fill out an online form that asks for your social security number and a credit card number.  Again, don’t respond to this email, better yet don’t open up any emails that you don’t recognize the email address.  This is, again, another way to get personal information and or infiltrate your computer.  Once in, they can manipulate and monitor your emails from afar, reading everything you send or get via email.  ONLY OPEN UP EMAILS THAT YOU RECOGNIZE THE EMAIL ADDRESS.  Delete all the others.

Online Purchases: Today we all buy stuff on the internet using our credit cards.  For these purchases only buy from sites that you know, such as Amazon, or from major stores like Best Buy or Walmart.  National brands will have secure website, and only use a credit card, NOT A DEBIT CARD.    Credit cards offer some protection for your purchase for which you can dispute, or send back for a credit if not satisfied.  Debit cards are like cash, once you purchase, it will be hard to get your money back, regardless of the reason.  Credit cards have what is called,” Dispute Resolution” and will do an investigation about the purchase and usually will support you with any returns. 

Finally, there is an old adage that says, “Whatever seems too good to be true, usually is (too good to be true) and therefore unrealistic and false.  And always back away from anyone or anything that has to be done, right away or on the spot, these are usually scams.  Legitimate vendors will be glad to let you think about a purchase before making it.  Most purchases can be held off until the next day, so that you have time to do some research and think about the issue.

 

Hospital Heroines Make For a Hearty Holiday for Lawrence Tenants

This past December Project Freedom at Lawrence held their annual tenant holiday party. Thirty tenants plus guests enjoyed a night of fun, music, gifts, food and laughter. With the generous help of volunteers from Notre Dame and Somerville High School, Gene and Michele Menges, Deborah Heart and Lung Hospital and many anonymous supporters, the event went off without a hitch!

As the tenants gathered in the entrance, many were sneaking peeks at the tables filled with gifts, anticipating the auction.

After enjoying a delicious dinner from Chiarello’s, and getting halfway through the Chinese Auction, the star of the night showed up! Santa escorted by his elves from the Slackwood Firehouse came in ringing bells. Santa made sure to stop at every table and take pictures with every tenant! The photos show laughing, smiling and pure bliss. All photos were printed out and delivered to each tenant’s front door to keep the memory of such a joyful evening. One tenant, began to cry as she expressed to Santa that his visit warmed her heart and lifted her spirits.

As Santa completed his rounds becoming clearly over heated by his attire, he stated how deeply moved and honored he felt to be a part of this special evening. Santa said he could go on forever visiting with our tenants as his heart was warmed by the smiles on their faces.

Every tenant went home not only with their own personal gift bag (donated by Michele and Gene Menges) but also with gifts won during our auction. This auction had over 90 gifts up for grabs covering eight tables. These gifts ranged from coloring books to China dinnerware.

None of this would have been possible without the generosity and selflessness of Deborah Heart and Lung Hospital! For the third year, the nurses and aides at Deborah have gone to extreme lengths to make a significant difference in the lives of so many.  The hospital staff members not only donated gifts but also their time to help our tenants have an amazing and memorable holiday season. Staff and tenants at Project Freedom would like to thank these angels for all they do.

In Natural Disasters, a Disability Can Be a Death Sentence

“Always ask people if they need help.” by 

Several of the 88 people killed in the Camp fire that devastated Butte County, California, in November had disabilities.

Their deaths were only the latest example of a tragic reality: When disaster strikes, people with disabilities are disproportionately affected. There are no statistics that show how many disabled people in the US say they could easily evacuate in an emergency, but around the world, just 20 percent of disabled people say they would be able to do so. And only 31 percent said they would have someone to help them in an emergency, according to a 2013 United Nations global surveyClick Here to read more.