An Open Letter to Mothers of Disabled Children

Posted on May 10, 2019 by Norman Smith

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.

From Norman’s Desk – February 2019

Posted on February 4, 2019 by Norman Smith

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 116^th 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

Posted on February 4, 2019 by Norman Smith

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

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.

From Norman’s Desk – November 2018

Posted on November 5, 2018 by Norman Smith

The petition begins: The New Jersey Disability Community wholeheartedly opposes efforts by companies, cities, and states to ban single use plastic straws. These policies create barriers to independence, community integration, and daily living for people with disabilities, work counter to our community ideals of universal access, and place an unnecessary burden on people with disabilities to fight for the accommodations we need to live independently.

The petition was started because well-intended but unwitting legislators are proposing legislation that will literally force people with disabilities who need straws to drink to bring their own to restaurants. The proposed legislation is aimed at saving whales and turtles by keeping plastic straws out of the ocean. A noble and worthy cause, but why pick on people with disabilities who need straws?

Many people with various types of disabilities rely on single-use plastic straws to drink, eat, and take medication independently. Many people reading this can relate to this. Currently, no alternatives to single-use flexible plastic straws exist that are safe, sanitary, and affordable for people with disabilities. Until these alternatives exist, it is unacceptable to create more barriers to independence and access by restricting plastic straw use.

Much of the fervor surrounding plastic straws is based entirely on viral videos and false statistics. Plastic straws make up only about .03% of plastic waste in the ocean (fishing nets by contrast make up 46%). To risk the rights to independence and liberty that our community has fought for only .03% of waste is unacceptable to our community! Furthermore, “offer-first” policies at restaurants have been shown to reduce straw use by up to 80% without creating any barriers to access.

Everybody wants to save the whale and the turtle, but nobody outside of our community seems to grasp that straws are tools for people with disabilities to live healthy, independent, and productive lives as equal members of our community. The disability community believes in creating policies that protect the environment, but we also believe that this can be done in ways that do not harm the disability community.

Though some cities and states have incorporated “disability exceptions” into their straw ban legislation, the disability community remains firm in our opposition. Medical exceptions force people with disabilities to disclose their disability to store workers. Requiring this puts an undue burden on disabled customers who already experience discrimination and victimization.

Misconceptions and stereotypes about what a “real” disability looks like can also lead wait staff to question the validity of a customer’s need for a straw causing them to deny, harass, or shame the customer. Do we want teenaged wait staff deciding who has a disability?/

The harsh penalties established by straw ban legislation provide incentive for vendors to err on the side of caution by routinely denying straws to anyone who requests them. It is also unlikely that stores will continue to stock plastic straws because of the (false) perception that people with disabilities make up only a small percentage of the population. This again creates an added barrier for people with disabilities. Now, when we decide to go out to dinner, not only do we have to call ahead to find if the space is accessible, but we must also find out if they have straws

While some may suggest that people who need straws simply carry around their own, this is an unfair request for several reasons. First, with straw bans sweeping the nation, single use plastic straws will inevitably become more expensive and difficult to obtain even for individual use. Second, it creates an unnecessary financial burden on people with disabilities who already experience increased rates of poverty, functioning as a form of “disability tax.” Eventually, these costs will be passed on to the taxpayer as the need for straws becomes “medicalized” to justify them as medical necessity so Medicaid picks up the ever increasing expense

In light of all of these reasons and more, the disability community is asking the New Jersey Legislators three things. First to reject any legislation that restricts access to single use plastic straws. Second, create an action plan to ensure the voices of people with disabilities are heard on all legislation before it reaches a vote. Finally, pass legislation that explicitly protects the right of people to access single-use plastic straws upon request in accordance with the ADA.

Maggie Leppert of the Alliance Center for Independence provided much of the factual foundation for this column. My thanks to Maggie, a future leader in the NJ disability advocacy community.

Norman A. Smith
Follow me on Twitter @normansmith02
Follow us on Twitter @TheFreedomGuys
“Like” us on Facebook.com/ProjectFreedomInc

“My Two Cents” – November 2018

Posted on November 5, 2018 by Norman Smith

So, as most of you know, Project Freedom holds our “Angel Award Dinner Gala” around this time in November. It is our once a year fundraiser which honors four individuals or organizations that have somehow contributed to furthering the cause for those with disabilities . Former Hamilton Mayor John “Jack” K. Rafferty was our first honoree, twenty one years ago, and we have continued ever since. I started this event when I became CEO, in an effort to gain support for Project Freedom and raise some funds for our tenant programs.

And each year I would work along with the Board Committee and Staff to generate auction items and to get people to attend our dinner. So, I was flabbergasted when the Committee suggested honoring me this year, along with our other honorees. Of course, I am humbled by the honor and by the fact that the board would consider me a worthy candidate. However, I am reminded that this is also a fundraiser, so that I am also expected to raise funds by getting as many folks that I know to attend this event. Of course I am happy to do so.

Now, in accepting this award, I need to recognize all our Project Freedom staff. We have had tremendous growth over these past six years, and it is due largely to our Executive Team, but also all staff members. Certainly credit goes to Tracee Battis, our Director of Housing Development; Steve Schaefer, our CFO, my own better half, Marion Doherty and, of course, our co-founder, Norman Smith. Also, our new ( almost two years now ) Compliance / Property Manager, Frank Sciarrotta, who contributes daily in supporting our project managers. These folks make my job much easier and enjoyable.

Big Credit goes to our project managers, who are on the front lines every day. Jackie, Joanne, Ceil, Dara, Laurie, and Sammi, and their support staff, Melinda, Jen, Bri, Joyce, Arlene, Judy, and Savannah, who manage the day to day operations of communities, so that our tenants can live in beautiful, well kept housing.

To our accounting Staff, Heather and Sakina, who now manage the books of twenty four entities, each of which need to be kept separately.

To our maintenance staff, Ed, Doug, Ross, Johnny, Frank, Damien, Mike, John, Len, Tony, Jim and Paul, who cut the grass, fix the plumbing, plow the snow and in general keep our buildings and grounds impeccable– I am always proud to show our properties to any visitors–be it the first project or the last–they are housing to be proud of.

To our recreation staff, Dana, Maria, Esther, Mary who work to create social opportunities for our tenants to enjoy, to get people out of their apartments and experience some fun.

To our tenant workers, Nate, Jen, Coby, Jeffery and Jason, who are always reliable.

Finally, to our Board Chair, Herb Schneider, and our Board of Trustees, who bear the ultimate responsibility for Project Freedom’s growth and advancement. Our Board meetings and committee meetings are robust, discussions, with people who care about Project Freedom and the welfare of our tenants. They are always looking to ensure that we are doing quality work that makes a difference in people’s lives.

So, I am honored to be recognized and to share our successes with all our Project Freedom family.

“My Two Cents” – October 2018

Posted on October 15, 2018 by Norman Smith

In early October, HMFA will be putting on the Governor’s Conference on Housing. This is usually a three day affair in Atlantic City, and it gives businesses and agencies such as Project Freedom the opportunity to see the latest products and services in the housing industry, but to also attend the various learning seminars on housing management and financing. It is also an excellent opportunity to meet face to face with HMFA and DCA officials, staff and other agencies, that impact affordable housing in New Jersey.

This year I have been asked to be part of a panel on Supportive Housing in New Jersey, which I have done in the past. This kind of workshop is very timely now since the affordable housing industry has recently faced some significant changes due to the Federal Tax Reform Act passed last year. That act significantly de-valued the price for Tax Credits by lowering the corporate tax rate from 35 % down to about 15 %. The net effect was to give a tax break to most corporations, who previously would invest in Tax Credits as a way to reduce their federal tax burden. Since taking effect last year, this new law has significantly lowered the price for tax credits ultimately reducing the total paid by as much as $ 500,000.

For Project Freedom, that reduction in total price paid put a big hole in our financing for our Gibbsboro project. Our investor syndicator did help by scrambling to find some other funds such as the penalty money paid to the Justice Department for claims against some of the largest banks. However, that money was limited and did not provide all the needed funding for this project. We had to do extensive value engineering to our buildings, that is to say, to give up some amenities, so as to bring the cost of the project more in line with our budget or available funds. Now under construction, we are hoping that we can save all of our contingency money so as to put back some of those enhancements.

Couple that issue with the fact that the State of New Jersey’s Budget continues to run a deficit with expected revenues to fall short of the expected spending. In addition, our new governor, Phil Murphy continues to want to increase spending for other social programs without really knowing that the funds will be there for their expense.

Finally, although many towns have settled in court on their Affordable Housing plans for the third Round, there are a number of new proposed bills in the legislature that will impact getting new affordable housing completed. Without giving the bill numbers here, one bill was to have every proposed project do an extensive, and costly, feasibility study before moving ahead. Another bill wanting to eliminate the PILOT programs that reduce the real estate taxes paid by these affordable housing projects. A third bill would require using Davis Bacon Wage scales to all construction projects that are funded with any federal or State funds. This alone provision would increase the cost of the projects by 30%, and thereby reduce the available funds for more projects.

So, with the fact that the Towns have had to go through the courts in order to get approval of their housing plans, many now are asking for the return of COAH. Funny, what goes around comes around.

“My Two Cents” – September 2018

Posted on August 31, 2018 by Norman Smith

Every year, Marion and I and Tracee Battis, our Director of Housing Development, attend the Governor’s Conference on Housing, which is always held in Atlantic City. Now I know what you are thinking, not much work goes on during that time, but probably lots of gambling. Not so with me however. I learned a long time ago that no one wins against the House. So, what I usually wind of doing is spending those dollars in the gift shop rather than at the blackjack table. At least that way, I bring home something for my son or daughter.

This year, I have been asked to be a part of a panel discussion on Supportive Housing. That means that I have to actually prepare a powerpoint presentation about Project Freedom Housing and why we think our housing is a preferred design when compared to other alternatives.

This is easy for me to do, since I live this job every day, and have a good idea as to what is successful and what is not. And the truth is it is really simple. Project Freedom housing is barrier free design, makes it easy for anyone to live in one of our communities. Whether you use a wheelchair or not, anyone can appreciate the functionality that our housing creates. Our units are larger than most, to accommodate a wheelchair; usually one story, or if two story, provide elevators in each building. They have lowered kitchen cabinets, ADA appliances, use sustainable outside materials and are Energy Efficient to the latest Energy Standards. Today, our new units are even LEED’s certifiable.

But I think the most important part of this story, is that our units are built with the understanding that we are creating the most independent environment possible. Our homes are for those individuals who are capable of independence and in making their own life choices. They are not group homes, that are run by one agency, which have caretakers that oversee everyone’s actions. Now don’t get me wrong, there is nothing wrong with the group home model, which does fit a certain target population. But our units are for that person, who although may be severely disabled, can make their own free choices, and can therefore live an independent lifestyle. All our tenants have leases, which give them certain rights and responsibilities for their apartment. They pay a rent, and for that, Project Freedom provides good housing, shovels the snow in the winter, and cuts the grass in the summer. We also fix anything that goes down in the units under normal course of business.

In the old days, prior to Project Freedom housing, the choices were very limited to someone who uses a wheelchair. Either a nursing home or hospital were all that was available. Not a good choice for someone in their twenties.

Now however, things are different. Our housing model has spurred other developers to at least build more units that are accessible within their market rate housing. That housing, along with our barrier free housing model are helping to increase the choices for independence that all people what to enjoy.

From Normans Desk – September 2018

Posted on August 31, 2018 by Norman Smith

This month marks seventeen years since the attacks of September 11^th.

For many, the memory of that awful day is fading, but my memories are vivid down to my shirt and tie. The day started out so bright, beautiful, and refreshing and ended so dark and frightening. September is also National Preparedness Month when preparedness experts try to catch your attention to prepare for another, inevitable, dark and frightening day.

Every year since the attacks, I choose to honor three fragments that create my memory of that day. First, I honor the life of my friend and colleague Colleen Fraser who died on Flight 93 with those other selfless heroes who may have saved the Capitol or the White House or thousands of other lives. Colleen was a fighter, and she was in good company that morning fighting to take back that plane.

Second, I remember the lives of the 343 FDNY firefighters who died that day. Most knew going into those buildings that some of them would not come out alive. They knew this instinctively by virtue of their experience and profession. They still went in with police officers and EMS personnel to save those who could not save themselves. They went in to save people with disabilities.

And, yes, thirdly, I remember those people with disabilities who died that day in those towers. I was not watching the horror on television that morning. I had a meeting at 10 o’clock and during that meeting I spoke of Colleen and wanting to connect her with someone. Later, someone told me of the collapse. My very first thought was that many firefighters had just died; my immediate second thought was that many people with disabilities had died as well.

How many people with disabilities died that morning may never be known. We do know that the corporations and government agencies housed in those towers hired people with disabilities. We do know that some people with disabilities made it out because they had a plan, their company had a plan, or some colleague or friend took the initiative to get them out. We do know that others stayed behind not wanting to burden friends, not wanting to get in the way, or just having unwavering faith that the FDNY would get to them. We also know that loyal friends stayed behind with them. We know that some people with disabilities who stayed were rescued but many died with their rescuers.

Every victim of these attacks needs to be remembered and honored. I feel a personal duty to honor Colleen, The 343, and those almost nameless people with disabilities who stayed behind.

Let us all remember the victims and the heroes of September 11, 2001, by getting prepared and staying prepared. You never know how a bright, beautiful, and refreshing day may end. Check out my Emergency Preparedness Desk page on this site by clicking here.

From Norman’s Desk – August 2018

Posted on August 8, 2018 by Norman Smith

This year will be the 23rd time in my life that I cast a vote for a member of Congress. I remember back in 1972 being forced to vote two weeks ahead of time by absentee ballot because my polling place was not accessible. I remember in 1992 being challenged at the poll because of disability, and I remember the empowerment I felt by calling a state hotline while at the poll to “fix” the situation to my satisfaction.

Times have changed for people with disabilities in terms of voting ease. Now most polling places and polling booths are accessible. Voting early by mail is encouraged for everyone in many states. Yes, there are still barriers to voting—especially in other states, but there is no excuse for any person with a disability not to vote. Nothing about us without us, right?

But I want to talk about something besides voting. I want to talk about people with disabilities getting involved with political campaigns. I have done it twice when I first starting out. I worked on a statewide Republican campaign for governor and a county campaign for a Democrat. They both lost, and that may be a commentary of the type of person I support.

Nevertheless, these campaigns opened doors for me, and, more importantly, these candidates, their staffers and supporters gained a greater understanding of my needs as a person with a disability. This was a great asset in advocating on disability issues through these same people over the years.

“Nothing about us without us” can take many forms at all levels of government. But we need to be involved to make this come true! We need to be involved from the start by voting! Before we go to public meetings, before we demonstrate, before we sit-in, before we get arrested, WE NEED TO VOTE!!! The rest is meaningless unless we exercise our right to vote.

To paraphrase our great leader Justin Dart: We need to vote as if our lives dependent on it! We all need to vote on November 6!

“My Two Cents” – August 2018

Posted on August 8, 2018 by Norman Smith

“What goes around, comes around.”

“What once was old is now new.”

I am sure we have all heard theses phrases before, so you won’t be surprised when I tell you that I am referring to issues revolving around Affordable Housing in New Jersey.

Yesterday I attended an open hearing of the Assembly Committee Housing. The committee members were called together by chairman Benjie Wimberly (D. Passaic) to discuss the state of affordable housing and the complaints of several Towns about the burden that affordable housing will place on their towns. This is the result of COAH not passing third round rules back in 2015, so the Towns have had to go to the Courts to resolve these issues. Most have settled with Fair Share Housing and have had their affordable housing plans approved by the Courts, however with numbers that they still don’t like. And so, a call for a return of COAH to administer these plans and settle these issues.

That would be all well and good, if COAH had been allowed to work as it originally was set up. In the early days, the COAH board was a bi-partisan Board and would work with towns to discuss their affordable housing issues and ultimately arrive at a settlement. However, the towns still railed against having to do their housing obligations, so then governor Christi’ sought to marginalize COAH to the point that it was no longer able to function. Ultimately, The Supreme Court ruled that until COAH is reconstituted, Towns would have to have their housing plans certified by the courts. So that is where we are today.

Settling through the Courts was always an option, however today it is the place of last resort, so that Towns now must finally settle, establish their plans and then help to get the construction done. This is what they don’t like. At yesterday’s hearing, I heard a lot of statements from the members of the committee, as well as from the mayors of many towns, of how they support affordable housing however they are worried that they don’t have sufficient infrastructure within their towns, to manage this new growth. They fear overbuilding of the town, overcrowding in their schools, and higher taxes. All this really without having any new construction being built yet.

So, this clearly is still a very big issue for towns in New Jersey. We are yet to hear about the new Governor’s position on Affordable Housing. Will the Governor re-institute COAH or a like body that will take up these issues and remove them from the courts. Or will he allow the process to run its course, through the judicial system, ultimately having judges making the decisions as a Town’s affordable housing plans.

My experience has been that even when COAH was an active body, some towns would still delay, and throw up barriers as to why they couldn’t comply with the law. However, with the issues in the hands of the courts, Towns have been forced to settle and move on. My recommendation would be to stay the course, allow the Courts to do their job, and settle these issues. No longer are towns allowed to get away with delay after delay, hoping for some governor or new legislature to change the law. Given some time, we will begin to see new housing develop that will ease the burden of those who need it. Finding decent and affordable housing should be something that we should all support.

Blogs