NJ Disability Advocates Release COVID-19 Report

For the past several months,  Project Freedom’s co-founder, Norman A. Smith, worked with other NJ disability advocates to address the gaps, shortcomings, omissions, and faulty planning of the State’s COVID-19  response as it impacted on people with disabilities.  They came together as the Disability Action Committee for COVID-19, and collectively they released our Initial Report at the end of October.

The Committee was convened by Javier Robles, J.D,  the current director of The Center for Disability Sports, Health and Wellness at Rutgers University.  Robles is the former deputy director of the NJ Division of Disabilities Services and a former member of Project Freedom’s Board of Trustees.

“This committee submits the New Jersey COVID-19 Disability Action Committee Report with our experience and recommendations for our state’s residents with disabilities’ future resiliency,” said Robles in his cover letter for the Initial Report.  He noted earlier in the letter that “our state’s health and social justice mechanisms must protect the health and wellness of people with disabilities and uphold their federal, civil, and state rights. We must do better, and we must prepare now for the next wave of this pandemic, the following national catastrophe, or any other emergency that awaits us in the future.”

Current Board of Trustee member Kelly Boyd also served on the Disability Action Committee and worked with Smith on the emergency management/preparedness section of the report

Emergency management and preparedness including people with disabilities has been a priority for Smith since 1999.  Smith has worked with emergency management professionals for more than 20 years to provide critical, disability-specific input on statewide planning and preparedness procedures. He has also worked closely with New Jersey’s 11 Centers for Independent Living Centers (CILs) to educate people with disabilities on how to be better prepared for emergencies and disasters.

I’m deeply concerned that New Jersey’s response to COVID-19 did not adequately anticipate the needs of people with disabilities,” said Smith when the report was released. “Having to write letters to remind government officials that people with disabilities have the civil right to life-saving critical care during this crisis is an indication that proper planning has not occurred with direct input from people with disabilities.”

“I strongly believes that New Jersey has the wherewithal and willingness to do better for its citizens with disabilities before, during and after emergencies and disasters. New Jersey must do this not only as a matter of law but, also, because it is the right thing to do,” said  Smith

The entire report can be found here.

From Norman’s Desk – October 2020

Norman A. Smith, Associate Executive Director

 

Readers of my monthly column should know by now that I’m interested  in politics, and especially the intersection of politics, disability, and the resulting public policies that impact on people with disabilities. 

The interest stems from being trained as a journalist during the Carter-Ford presidential campaign while living on a college campus with many activists with disabilities. I caught the “inside politics” fever.

And, by happenstance, I became involved with two political campaigns upon returning to New Jersey.  One for a Republican and one for a Democrat, and I quickly learned that disability-related policies are not partisan issues at the local level.

I also learned that participating in campaigns is a great way to educate people in politics about “our   issues,” and it is very helpful in building up credibility if you decide to do something unusual like start building housing to support people with disabilities.  I cannot tell you how helpful it  is to advocate for something with politicians who know you personally.

This is why I encourage anybody with a disability to get involved with politics.  First and foremost as   voters.  Then, if you like a candidate, become involved by volunteering with the campaign.  Become  engaged, ask questions, and don’t just focus on disability issues.

We live in the Community. We need to ask about issues beyond our own because our needs for safe neighborhoods, effective and efficient local governments, well maintained infrastructure, and well-run services are just as great as our able-bodied neighbors

I’m a great believer in democracy even as messy and raucous as ours is right now.  What is happening now, however, is not that unusual if you delve into early U.S. history.  If it existed, Twitter would have been used by Thomas Jefferson and Alexander Hamilton to insult and degrade each other in their campaigns.  Instead, they used the printing press to print daily or hourly “broadsheets” to accuse each other of lying, cheating, or having scurrilous vices like enjoying Thespians..

Our democracy is cheapened by the ugly discourse, but it is endangered much more by people opting not to participate in the process.  Sure, there are winners and losers with participatory politics elections, and, sure, democracies sometime make huge mistakes with major consequences. The key  to democracy is to stay engaged no matter who wins or loses.

A year ago I predicted we would be in the most contentious presidential campaign in my experience.    Little did I know that we would be smack in the middle of a deadly pandemic, a racial  reckoning, seemingly endless natural disasters, and wacko fringe elements stoking civil strife for the causing chaos.  It is enough to make someone disengage.

But we can’t!  So, let’s get and stay engaged!

 

“My Two Cents” – October 2020

Tim Doherty, Executive Director

As fall approaches, we all enjoy the vibrant colors of the surrounding landscape, and Project Freedom is usually busy planning its annual Angel Award Dinner, a tradition that spans more than 20 years.  This year, due to COVID-19 protocols, we will not be able to host a celebration with 250 guests in attendance.  Instead, we will celebrate the resiliency of our staff and tenants in navigating today’s new and challenging world.         

Quietly and faithfully, five organizations have been providing food for our Project Freedom neighborhoods.  Arm in Arm, and the Jewish Family & Children Services of Greater Mercer County organizations have been delivering grocery bags on a monthly basis to tenants experiencing food insecurities.  The Hopewell Valley Regional School District and Hopewell  Valley Mobile Food  Pantry have been bringing food and meals to some of our Hopewell families.  The National Equity Fund Inc. generously donated $ 10,000 to Project Freedom to provide food for 137 tenants in three of our communities.  These five organizations have been the Angels of 2020 for many of our tenants who benefited from the gift of food.  We would like to recognize each of these outstanding organizations for the food relief that they provided to many during the past seven months.

So, this fall, instead of attending our annual Angel Gala, we instead invite you to tune in to a Live Stream event, which will honor and recognize our heroes of Project Freedom as well as entertain you.  Please mark your calendar now for this exciting, new event.  Project Freedom will Live Stream a program on Saturday, November 7, 2020 from 7:00- 8:00 PM from our Hopewell campus on Denow Road in Pennington, New Jersey.  This Live Stream program will include music by the wonderful local band, Kindred Spirit, information on the newest Project Freedom communities, and a presentation of awards to our 2020 honorees. 

The funds from our Angel Award Dinner have supported programs and services for our tenants each year.  In the past, our attendees and sponsors have given generously to this annual event, and we are grateful, and we hope that you will continue to do so this year as well.

Donations can always be made by mailing your check or by credit card to Project Freedom Inc.  Or by going to our website at www.projectfreedom.org.  All donations are tax deductible. 

Help us continue the work of building housing communities that promote Independence for everyone.  So, in order to attend our Live Stream Fundraiser, just log onto our website at www.projectfreedom.org and tap on the link, Live Stream Event.

See you then.

 

Gateway Food Pantry Helps Woodstown Tenants

The “Gateway Food Pantry” recently delivered produce and food to the tenants of Freedom Village at Woodstown in Salem County. 

The food pantry is operated by Gateway Community Action Partnership, a Community Action Agency.  It is a private and public non-profit organization that serves seven counties in New Jersey and the City of Philadelphia with multiple programs.

This was their first delivery of food to our tenants, and  Project Freedom truly appreciates your generosity and support of our tenants!

 

 

From Norman’s Desk — September 2020

A white male with glasses looking up at camera smiling wearing a green shirt and cap with CERT written on bothThis month marks nineteen years since the attacks of September 11th.  National Preparedness Month is also recognized each September to promote family and community disaster and emergency planning now and throughout the year.

The 2020 theme is: Disasters Don’t Wait. Make Your Plan Today.

For many, the memory of that awful September day in 2001 is fading, but my memories are still vivid down to my shirt and tie.  The day started out so bright, beautiful, and refreshing, but it ended so dark and frightening.  The feeling of anger and uncertainty spread around us like a cloaking fog.

That feeling is around us again as COVID-19 has changed our lives, and the future is uncertain as we all work through this “new normal.”

Every year since the attacks, I choose to pay tribute to the three elements 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 U.S. Capitol or the White House and 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 10:00, 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.

This year I also pay tribute to the doctors, nurses, medical support staff, direct care staff, and first responders who put their lives on the line trying to save others from COVID-19.  They also ran toward danger to help others, and many paid with their health or their lives.

How many people with disabilities died that morning in September 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.

In the same manner how many people with disabilities have died from COVID-19 may never be accurately known. We do know that nearly 40% of the COVID-19 deaths occurred in nursing homes where many people with   disabilities are forced to live.  We do know that people with disabilities living in the community have been isolated by the lack of community-based direct support workers.  We do know that the government is not tracking the deaths of people with disabilities as a COVID-19 statistic.

Every victim of these national tragedies 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 that September day.  I also honor the nearly 200,000 persons who have died in this pandemic.

As I say each year, 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. 

PF Communities Work Together During Power Outage

On August 11, 2020, Hurricane Isaias made landfall in New Jersey, causing about 3.7 million power outages across the state.  Freedom Village West Windsor was one of those communities affected by this massive outage. 

With tenants without power or air conditioning, the Project Freeeedom staff at West Windsor and Lawrenceville swung into action together to provide breakfast and hot coffee for the tenants.

Then the tenants of West Windsor also jumped into action to help each other.  They donated thawing food to be grilled by other tenants to provide hot lunch and dinner for everyone.

Project Freedom staff was also able to set up a generator to allow tenants to charge electronics and medical equipment throughout the day.

Project Freedom extends immense gratitude to the staff and tenants who helped their community during this time.

With their help Freedom Village at West Windsor was able to turn a disaster into a community enrichment day.

Two white rectangle tables with coffee in disposable boxes, donuts, and breakfast bars.
Blackout Breakfast

Hotsdogs and other grilled food items on a serving plate with servings tongs. Two hamburgers are on the table with other food.

A white rectangle table with phone charging cables.
A charging Statrion for phones was set up powered by a generator.

From Norman’s Desk – July 2020

Norman A. Smith, Associate Executive Director

For the thirteenth time in my life, I will vote again this year to elect the President of the United States of America.  I remember in in 1972 being forced to vote two weeks ahead of time by absentee ballot because my polling place was in accessible.  I  remember in 1992 being challenged at the poll because of my 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, but this year COVID-19 is forcing many states to encourage voting by mail for everyone in many states.  Yes, there are still barriers to voting—especially this year 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 again about something besides voting. I want to talk about people with disabilities getting involved with political campaigns. Of course, COVID-19 is preventing this kind of activity this year, but it is important to see how you can become involved through technology and Social Media.

I became involved with campaigns twice when I first starting out as a disability advocate.  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.

The disability community has a saying: “Nothing about us without us!”  It means that people, programs, agencies, and governments shouldn’t make decisions about people with disabilities without our involvement in the decision process.  Well, the decision process for the 2020 elections is moving ahead on all levels of government.  We need to be involved! 

We need to VOTE on November 3!

 

“My Two Cents” August 2020

Tim Doherty, Executive Director

Many of you know that our daughter, Jen is disabled and lives at our Hopewell Project Freedom community.  Jen started her adult life in 2003 when she moved into our Lawrence site, and lived there until    moving to Hopewell in 2015.  So, since that time, she has been for the most part, on her own, with Mom and Dan providing emergency support when needed.  Having that personal care support has been critical to her living successfully on her own, out in the community, as well as for many of our tenant consumers.

I have often been asked why Project Freedom didn’t provide that service along with our housing.  This is usually the case with agencies that provide and run, Group Homes.  The Group Home model works very well for many disabled consumers, and it consists of three or four unrelated individuals who live at the home with a care giver.  These homes usually provide 24/7 care by a live in aide or aides, and for many families, this model works very well.  The only problem comes when a consumer is not happy with the care provider, and wants to change that provider.  To do that may require moving to    another location or to another different service provider, something that most consumers do not wish to do.

When Project Freedom set out to create our housing, we sought the ability for the consumer to have the most independence possible.  In essence to be “Master of his/her own universe” and to choose how one would live life with as much independence as possible.  If the person needed personal     assistance, then it was up to them to choose and decide who they would work with and with what  agency. 

At Project Freedom housing,  the individual is not tied to one particular living situation but can change service providers at any time.  The only thing we require is that they pay their rent and their  utilities, and obey our housing rules, which is what is required at any apartment complex.  This promotes independence and choice for our consumers without the risk of losing their present housing or apartment if they choose a different personal care provider.

Finally, those of us who are part of the disability community and those families served, need to recognize the tremendous service that these personal care workers provide to our loved ones.  Because of their efforts, they contribute to the independence and freedom that our families and consumers enjoy.  Furthermore, these workers are not paid a rate of pay that reflects their worth, and often have to work two jobs today to make ends meet.  These folks are also our “ Front Line workers “ who have had to meet the demands of today’s COVID -19 days, with their service in our hospitals and other vital service areas. 

So, hats off to all those who serve in this line of work—you need to know that because you are out the

Long Road To Hollywood: Why Actors With Disabilities Have Yet To Be Recognized

By Wendy Lu, The Huffington Post, July 19, 2020

A pedophilic circus performer. A comedic womanizer. A killer.

These were just a few of the roles that Danny Woodburn was offered when he began auditioning for film and TV roles in the early 1990s. Woodburn, a self-described little person, quickly found that nearly every character he portrayed was “miserable,” broken or evil.

“The go-to, I think, for little people is to make them creepy or animalistic,” the actor and producer told HuffPost.

Even after landing a recurring role on “Seinfeld” and scoring gigs on shows including “Watchmen,” “Jane the Virgin” and “CSI,” Woodburn said he still came across casting opportunities that recycled tiresome tropes invoking pathos for “the sad little man.” Just a couple of years ago, casting agents tried to pitch him on a role in a Christmas special by saying he’d get the chance to kiss a famous performer.  Read More Here

“My Two Cents” – June 2020

Tim Doherty, Executive Director

During this time of the pandemic, many functions and events have been forced to cancel or re-schedule for maybe another time.  One of the most heartbreaking is the cancelling of graduation for all our students, robbing them of the chance to relish their achievements.  And as sad as that is, every generation has been forced to endure some kind of  interruption from events out of their control. This happened to my father in law when he was called up for WWII. 

 My son recently wrote about his own graduation which he had coupled with his grandfather, 50 years later.

 

Graduation Moments Deferred
Written by Tim Doherty Jr.

Graduates in the class of 2020 are missing out on one of the great rites of passage. Never in the past would we have thought the ability to stand on a stage in a gymnasium or on a football field filled with our peers and families would seem like such a privilege, but alas only in loss do we sometimes see the value of what we had. While the ceremony itself adds little to the educational accomplishments of the class, that ‘graduation moment’ somehow acknowledges, celebrates and completes the work of the student, allowing them to begin their next chapter.

While the pandemic is itself without precedent, its disruption to our important life events isn’t. I offer a story of a graduate who also didn’t cross that stage with his peers, but instead got a more personal opportunity to celebrate his accomplishments.

My grandfather, James Wilson, completed his engineering degree at Lehigh University in 1944. His Lehigh experience was one of a poor kid, commuting from a nearby town, during the tumultuous war years. Everything was focused on the war, even the academic year was altered to a trimester schedule to speed the process of minting graduates for the war effort.

In his last semester, he was selected for an assignment in the Merchant Marine, took his finals a few weeks early and shipped out before commencement ceremonies were held. Like so many who sacrificed greatly for the defense of our country, he never dwelled on missing graduation, but it was none-the-less a part of his story. His degree arrived in the mail in a cardboard tube.

Fifty plus years later, I began my own Lehigh education and grandpa got to observe a different version of ‘the college experience’. I lived in a dorm and enjoyed campus life, and grandpa was a frequent visitor and supporter. We enjoyed sharing Lehigh and although already close, were brought closer by this shared bond.

When it came time for me to graduate, I contacted the university president who agreed to the idea– grandpa should walk in commencement ceremonies with me. It took a little prodding from my grandmother to get him to agree because he didn’t want to take away from my graduation. But I can honestly say it was a far more special day because he participated. After my name was called and I walked across the stage, shook the hand of the University president and received my degree, I turned around just as the announcer read “James Francis Wilson.” Immediately, the whole arena roared with applause and the crowd gave the 75 year old graduate a standing ovation as grandpa finally had his ‘graduation moment’.

While it’s impossible to know what either my or my grandfathers graduations would have been like otherwise, the circumstances of his commencement deferred gave us a special opportunity to personalize our experience. I offer this story because it might be the case for the class of 2020 that your ‘graduation moment’, although deferred, is now yours to choose. Perhaps instead of video commencement or drive thru graduation, the best idea is to offer the class of 2020 the opportunity to participate in a future ceremony (hopefully not 50 years later), maybe with a sibling or at a particular reunion anniversary– whatever might make it even more meaningful to the individual. I hope the administration of schools and universities will give this some consideration, so that instead of the class of 2020 being the class who didn’t have a graduation, they’ll be the class who got to have their ‘graduation moment’ on their own terms.