Our nation celebrates its Declaration of Independence from Great Britain on July 4th. We celebrate the idea that this nation wanted to be free from rules, regulations, and laws created without input from the Colonies.
We also celebrate the concept that each person has equality in the eyes of the law. Although many are still tramping upon this basic concept today, its promise has survived thanks to the sacrifice, blood, sweat, and tears of many.
As we celebrate Independence Day, we need to remember what we are celebrating and why. We need to remember the sacrifices of those who have died for the concepts of independence, liberty, and freedom. We must also remember that the fight is not over for people with disabilities, and, indeed, remember that the fight is only beginning for many of us.
The promise has been slow in coming for people with disabilities, and for many of us, equality is still not here, is still a concept enjoyed by others, and is a promise that still needs to be kept.
The promise is a lofty one, yet for some people with disabilities the promise translates into more practical considerations: the freedom to make choices in their daily lives, to be responsible for their lives, and to be a contributing part of their community.
Freedom and independence are grand sounding words, but for some they mean the right to do simple tasks.
Freedom and independence are empty and hollow words when elected officials ignore our needs and discount our vote.
Expecting the promise of freedom to be kept without struggle and sacrifice is foolhardy. Again, our history teaches that participatory governance over oneself or one’s country means stepping up to participate and sacrifice. Individuals must take up the cause of freedom, work together, and battle for the promise to be kept. This is true now for people with disabilities.
So, while we celebrate what happened 242 years ago, let us remember for many of us with disabilities the struggle for freedom continues! Join me on July 16 to “RevUp the vote by people with disabilities at our rally at the NJ State House. Get more information by clicking Here
April brings the beginning of warmth, some booming flowers, and thoughts of what to wear to high school proms. This can be an anxious time for some young ladies, but an event held at Freedom Village at Toms River may have relieved some this anxiety for some.
Around 30 young ladies from neighboring towns came to browse, try on, and leave with any gown of their choice for free, thanks to the efforts of Maria Paradiso-Testa.
“All gowns were donated,” said Paradiso-Testa, who is a professor of Education at both Monmouth University and Georgian Court University, a community activist, and a minister/chaplain.
“I have been a community advocate for many years,” said Paradiso-Testa, “ volunteering wherever the needs of the people are. My daughters always help and support all projects; they both suggested that their gowns be donated to students for their prom.”
From there, this idea grew to an event. .
“As we discussed this further, we decided to ask around,” Paradiso-Testa continued, “ and in less than two weeks, over 100 gowns were donated. There are a lot of good people with big hearts who are willing to help others, and we all work together!”
Park Avenue South Boutique, of Toms River, was a major supporter, donating more than 25 brand new gowns.
“Shoes, purses, and jewelry were also donated,” she continued. “Most came from individual people, word of mouth, social media advertising, and personal requests.”
The Flower Bar of Brick offered free floral bouquets, and a Toms River hair salon offered a discount coupon for services.
Then the event needed a venue. Last year Paradiso-Testa sponsored a Women’s Seminar. “One of the women working with me suggested Freedom Village Community Center because she lived there. We hosted the seminar, and all the people who came loved the center.”
For the prom-gown event “the Freedom Village Community Center location provided a safe, pleasant, and beautiful environment for the girls to come with their friends, parents, and grandparents to have the shopping experience, that was definitely priceless,” added Paradiso-Testa.
Project Freedom’s Toms River management team, Laurie Solymosi and Joyce Cocco, were present throughout the day with Cocco volunteering many hours to the event.
“Special thanks to Joyce Cocco, who assisted from the beginning through to the very end,” offered Paradiso-Testa. “Joyce offered her assistance, provided multiple gowns through sharing her resources, and was a tremendous help the day of the event.”
The young ladies who participated came from area and schools including Toms River, Lakewood, Jackson, Brick, Manchester, Mates, Performing Arts Academy, Bishop Ahr High School, and multiple middle schools. Girls from Freedom Village also participated.
“If it wasn’t for the opportunity provided through Freedom Village at Toms River, this unique experience would not have been such a great success,” said Paradiso-Testa. “The smiles on the girls faces made everything complete.”
For most of my life and well into adulthood, June represented the end of school and the beginning of the Summer season. Even after leaving college too many years ago, June felt like the end of a period of intense work.
More recently, as my readers are keenly aware, June became my month to remind everyone to be prepared for Hurricane Season, which “officially” begins June 1.
Much more recently, June has been the month to write about being a father. I have only celebrated Fathers’ Day nine times as a father before this year. Celebrating the day as a father is far different than celebrating as a son with my father. For one thing, a son is trying to show his Dad his love and appreciation that he feels for him while the Dad wants to show his son (or daughter) the wonderment and pride of being Dad. Being Dad to any child is wonderful and awesome. Father’s Day is the icing on the proverbial cake.
Fatherhood and Motherhood can be daunting and pleasurable at the same time. Every parent knows this mixture of feelings. I think, however, those of us with obvious disabilities also feel an additional mixture of emotions. Indeed, there is pride of your child and pride of being a parent when others think you should not or cannot be a parent.
There is also the apprehension of being judged by others because you have a child and a disability. Your capabilities and skills as a parent are constantly being scrutinized to see if, indeed, you can take care of your child. This scrutiny is always in the back of your mind as you try to let your child experience what other children experience.
The article below by Robyn Powell, an attorney and a nationally recognized advocate fr people with disabilities, describes some of the fears and harassment that parents with disabilities face throughout the nation. The parents profiled in Robyn’s in depth piece are themselve “frontline” disability advocates who have the fortitude to fight for their children, and this makes me frightened for the parents with disabilities who have not yet learned these skills. How many have lost their children because the “system” can be overwhelming?
This is the unfortunate price we pay by being parents with disabilities. Before President Obama left office, the White House sponsored a conference on parenting with disabilities because more people with disabilities are paying that price nationally. The price can be minimal for some, higher for others, but well worth it to hear your son say “Happy Fathers’ Day, Dad!”
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PARENTS WITH DISABILITIES FACE AN UPHILL BATTLE TO KEEP THEIR CHILDREN
by ROBYN POWELL – Pacific Standard — January 3, 2018
Nearly one in 10 children in the United States are at risk of being removed from their home by a child welfare agency simply because their parent has a disability.
In October, a lawsuit was filed on behalf of five parents with disabilities who had their children removed by New York’s Administration for Children’s Services, alleging widespread discrimination. What happened to these families is not unique or uncommon; rather, their tragic experiences are part of a national phenomenon: Parents with disabilities are disproportionately involved with the child welfare system and once involved are more likely than non-disabled parents to have their parental rights terminated.
For more than four years, Amy Fabbrini and Eric Ziegler have been fighting with the state of Oregon to regain custody of their sons, Christopher and Hunter. Both Fabbrini and Zeigler have intellectual disabilities. “I tend to learn a little slower than others but it in no way affects my abilities to safely care for my kids and has no effect on my day-to-day living,” Fabbrini says.
Christopher was removed by Child Protective Services in September of 2013 when he was only four days old, after Fabbrini’s family contacted the agency, concerned for Fabbrini and Ziegler’s ability to care for the baby. In February of 2017, CPS removed Hunter, when he was only two days old, directly from the hospital. According to Fabbrini, “they have been in the system ever since.”
Since their initial involvement with CPS in September of 2013, the couple has enrolled in several parenting classes. “[CPS] said if you take this parenting class or if you do this course or you do these steps then that will increase your chances of getting your son back. Well, here we are four years later and we still do not have our children,” Fabbrini says.
The couple’s quest to regain custody of their sons has persisted for four years and included many courtroom battles. As Fabbrini and Ziegler navigated these trials, they also became figures in the fight for disability rights. “Our main goal is that we want our kids back and to have a family. We also want to stand up for other families in this situation and help them have a voice.”
For Carrie Ann Lucas of Windsor, Colorado, these issues are both personal and professional. Lucas has mitochondrial myopathy, a type of muscular dystrophy that requires the use of a power wheelchair and ventilator assistance to breathe. She is hard of hearing and has low vision. Lucas is an attorney and has represented parents with disabilities for nearly two decades. She currently works for the state agency that oversees court-appointed attorneys.
Lucas is the mother of four children, all of whom also have disabilities. She has adopted each of them from foster care. Despite the state deeming her capable to adopt four times, Lucas has been referred to CPS on numerous occasions, and says she has “lost track” of the exact number.
One time, for example, her daughter’s school filed a report with CPS because the girl’s ponytail was “too tight.” Other times, Lucas was reported to CPS for neglecting her children because she wanted them to be independent and autonomous, such as requiring her teenage daughter to drive her own wheelchair from the school bus to the door of her home.
Every referral to CPS increases the risk of further action, even if the report was based on senseless allegations. “If people have multiple referrals, then every single one gets investigated,” Lucas says. These investigations can be traumatizing for families, especially for children who came from foster care and have long involvements with CPS, like Lucas’ children.
Lucas’ first negative encounter began nearly two decades ago when she set out to adopt her niece, a process that lasted 16 months. It took a judge threatening to put the CPS worker in contempt of court if she didn’t immediately place the child with Lucas. Lucas says the CPS worker told the judge, “There is no way that a handicapped woman can take care of a handicapped child. We’re going to be picking up the child within two weeks.”
“Well, we’re 18 years down the road, and she’s still with me,” Lucas says.
Lucas’ experience motivated her to attend law school and become an attorney. “I thought, if this is happening to me, and I have a master’s degree [and] I take care of other people’s children all day long, what’s happening to every other parent?”
Nicole Brisson of Sage Haven Associates, Inc. conducts parenting assessments of people with disabilities and provides recommendations to CPS and the courts. Brisson’s intimate involvement with child welfare cases involving parents with disabilities offers her a unique perspective.
“I think that the lack of understanding of community members and stigma causes parents with disabilities to be under a microscope more so than parents without disabilities. A bump or bruise on a child of a parent with a disability who is learning to walk might warrant a call to CPS, whereas it would not if the child’s parent did not have a disability,” Brisson says.
Once parents with disabilities are reported to CPS, they face pervasive stereotypes that often have devastating consequences. CPS has an obligation to act, which often means hiring experts to guide them. Yet Brisson claims many experts have little to no training or experience working with people with disabilities, and are unable to adequately evaluate parents and measure progress. “Courts do not realize this, err on the side of caution, and move to terminate rights often without evidence that the parent is unfit.”
Bias toward parents with disabilities transcends all disability types—physical, sensory, intellectual, and psychiatric. However, Lucas says certain segments of the disability community experience worse treatment. “I think [parents with physical disabilities] get a lot of referrals, but we don’t get a lot of cases,” she says, referring to the difference between doing a welfare check and opening a full-fledged investigation. “For parents with intellectual disabilities and psychiatric disabilities, referrals often turn into cases.”
For Fabbrini and Ziegler, the fight is far from over. A circuit judge issued a ruling four days before Christmas that deemed the pair fit to raise Hunter, stating, “I feel the threat articulated to Hunter is fairly amorphous. … There is no allegation that they’re not able to meet his basic needs.” Though they were able to take 10-month old Hunter home from foster care, they’re still battling to bring four-year-old Christopher home as well.
The rights of parents with disabilities and the rights of children are not mutually exclusive, yet in ensuring the rights of children, the rights of parents with disabilities can often go by the wayside. Ensuring that disabled parents have the opportunity to raise their children and are provided support, if needed, benefits both parents and children—the onus now falls on Child Protective Services agencies to adequately protect both children and parents with disabilities.
From time to time, I write a column on the status of our affordable housing situation that is playing out now in New Jersey. Since the Supreme Court’s ruling that COAH was defunct in 2015, Towns have been required to work out their “Round Three” obligations in the courts. Most towns have settled, and have entered into an agreement with Fair Share Housing but still a good many have not, so this process now is shaping up to be a rather lengthy one. Based on recent court rulings, especially one from Judge Mary Jacobson, in Mercer County, the courts are not letting the towns off the hook—with many judgements requiring more units than if the towns had settled their cases in the first place.
In many of these settlements, the Court is requiring that the Towns provide the “ reasonable opportunity “ for housing to be built, which also mandates that the Towns provide some kind of financing, or contribution to these projects, in order for them to truly be built. Many towns have used their affordable Housing Trust Funds for this financing, and as a result have no moneys left for future housing needs. About half of the towns have not completely used up their funds, and as a result the State of New Jersey estimates that there is about $46 million in these municipal trust fund accounts which could be used for that purpose. These funds were raised when A500 was passed and allowed the municipalities to charge a 2% fee on all commercial new construction. The law specifically mandated that these funds had to be maintained in separate accounts and could only be used for the creation and support of affordable housing.
Two years ago, then Governor Chris Christi tried to take those remaining unused funds to balance his State Budget, however the Courts ruled against his doing so. Many towns also placed those existing funds into new accounts, which were not reported to the State. Now, when towns very much need these funds to complete their affordable housing plans, the present governor, Phil Murphy, is again trying to take those funds to offset his current State budget deficit. His plan is to move those funds over to the Department of Human Services which would thereby reduce what he would have to provide from the general State budget—not what the funds were intended to be used for.
Now we have heard this kind of proposal before. The legislature will pass a particular bill to remedy a specific need, but then when some other perceived crisis seems to occur, the moneys are funneled back into the State general fund, where the Governor can use as he pleases. This is simply not right. The Affordable Housing Trust Fund moneys should only be used for their stated purpose—that is to build affordable housing—not to be a substitute for the funding of a specific State Department or agency.
Now this argument is hard for me to make, since funding Human Services is something close to my heart and the consumers and tenants of Project Freedom. However having a place to live is equally important, and using these funds to replace original Human Service funding is not what should be done. Some would call this process, “sleight of hand” or robbing “Peter to pay Paul.” Also, it is disingenuous to change the purpose for taxation, from its original intent, to then use those funds to shore up the State budget. The Legislature needs to tell Governor Murphy, NO, that these funds need to be used only for the creation of affordable housing, otherwise New Jersey will continue to fall further and further behind on this issue, and towns will never have the resources to fulfill their stated housing plans.
Jerry Carino, @njhoopshaven Published by Asbury Park Press May 21, 2018 | Updated May 21, 2018
HOWELL – Like any college student, Anna Landre was thrilled to land a quality summer internship.
Unlike her peers, though, she faces a brutal decision: Taking the job means losing some crucial health benefits.
The Howell 19-year-old has spinal muscular atrophy type 2, a progressive weakening of the muscles. She uses a motorized wheelchair and needs a personal care aide at her Georgetown University dorm.
“I was shocked when I heard this,” said state Sen. Vin Gopal, D-Monmouth, who is working on a solution. “It really limits folks who are able to work, who want to work and can make a great impact on our community.”
Landre has much to offer. Last year she graduated Freehold Township High School as valedictorian. She’s used to navigating barriers created by the able-bodied folks who make the rules for society’s disabled.
“A lot of times it’s a matter of people telling you no 50 times, until you call 100 times,” she said. “There are always exceptions that can be made, but you have to push hard. I think the state relies on the fact that eventually you’re going to give up.”
That’s not happening here. There is much at stake for Landre and others who might follow in her footsteps.
Most of us don’t think a whole lot about getting dressed. Sure, we might care about our style, but the actual process of putting on clothes—pants one leg at a time, button through the button hole—is as automatic as breathing.
But imagine you only have one arm. How do you button your shirt now? What if you receive nutrition through a feeding tube implanted in your stomach? Wearing that cute dress means you can’t eat in public, lest you flash everyone in the room. Think about what the tight waistband of your jeans might feel like if you were autistic and had magnified sensitivity to touch.
For years, people with disabilities and special needs have had to improvise. Those with cerebral palsy that affected their hand coordination might replace sleeve buttons with Velcro. Parents of autistic kids would cut the scratchy tags out of their children’s t-shirts. But now, a slew of companies both new and established are creating “adaptive clothing” to meet these needs.
Target has been at the forefront, with a line of adaptive clothing for children, designed by a mom with a special needs daughter. The clothing come without tags or seams, a boon for children who find new textures irritating. Body suits are easy access for diaper changes, while wheelchair-friendly jackets have side-openings and zip-on sleeves for easier dressing. This year, the company added lines for adults with physical and mental disabilities as well. Tommy Hilfiger, best known for its high-end sportswear, just launched Tommy Adaptive, a line of clothing for children and adults with various needs, from jeans that fit over prosthetic legs to shirts with easy-open necklines. The shoe e-retail giant Zappos has also started selling adaptive shoes and clothing, from stability-enhancing sneakers to shirts with magnetic buttons. In 2015, Nike created the FlyEase, an easy-on zippered athletic sneaker inspired by a letter from a teenager with cerebral palsy who struggled with regular sports shoes. The company now makes the shoe in men’s, women’s and children’s sizes.
The Huntington businessman with Down syndrome who gifted George H.W. Bush socks he wore to Barbara Bush’s funeral will be heading to our nation’s Capitol on Wednesday to testify before Congress.
John Cronin, 22, will discuss his business, John’s Crazy Socks, to the U.S. House Committee on Small Business.
John and his father Mark Cronin run a business called John’s Crazy Socks where they donate 5 percent of their earnings to the Special Olympics. The business has become so successful that they now operate from a 6,400 square foot facility in Melville and employ 33 people, including 15 people with differing abilities.
Microsoft is committing $25 million over five years to develop artificial intelligence-powered technologies to help people with disabilities.
The aim of the new program announced at the Microsoft Build developer conference in Seattle this week is to use AI to help people with disabilities deal with challenges in three key areas: employment, human connection and modern life. Microsoft said it will award seed grants of its technology to universities, developers, institutions and others; help scale promising ideas; and work with partners to incorporate more accessibility functions in their products.
Microsoft pointed to a few Microsoft apps that have already helped people with disabilities. Microsoft Translator has been an important investment for the company as it has sought to improve the ability of its AI to help people have conversations in different languages. Last year at Build, Microsoft introduced Seeing AI, an app that uses the smartphone camera to narrate what it’s seeing.
Norman A. Smith, Co-Founder/Associate Executive Director, Project Freedom Inc., is a subject matter expert in inclusive Emergency Preparedness for people with disabilities, functional, and access needs
It is May! It is time for my annual rant as we near Hurricane Season.
“In the next decade, the probability of a major hurricane hitting the Northeast is one and a half to two times greater than in recent years. We are returning to the earlier decades where landfalls were more common,” said from Dr. William Gray, Emeritus Professor, Department of Atmospheric Science, Colorado State University.
That prediction came true five years ago with Hurricane/Super-Storm Sandy slamming into New Jersey. This year’s predictions by Colorado State University’s team, now headed by Dr. Philip J. Klotzbach, is for a “slightly above” average season for 2018. This is worrisome since last year’s initial prediction was for an “average” season.
This is the 35th year that the CSU hurricane research team has issued the Atlantic basin seasonal hurricane forecast. Recently, the Tropical Meteorology Project team has expanded to include Michael Bell, associate professor in the Department of Atmospheric Science. William Gray launched the report in 1984 and continued to be an author on them until his death in 2016.
Dr. Klotzbach’s team’s initial prediction is: A total of 14 named storms with seven hurricanes and three of them becoming major hurricanes.
Last year’s prediction was 12 named storms, six becoming hurricanes, and two reaching the major threshold.
The actual number for the 2017 season was 18 Tropical Depressions turning into 17 named storms; ten of these storms turned into hurricanes with six being “major” in power and scale. Remember Hurricanes Harvey and Maria?
The prediction also estimates the probabilities of at least one major hurricane making landfall:
For the Entire U.S. coastline – 62% (Last year it was 42%)
For the U.S. East Coast including Peninsula Florida – 39% (32% last year)
With this year’s prediction in mind, it is not too early to start thinking about severe weather and being prepared for it. The first step is being more aware of both the potential threat and the “emergent” or imminent threat. Here is what FEMA recommends that people with disabilities do to address that need.
Severe Weather Preparedness for People with Disabilities—It is important to know in advance what steps you need to take to keep yourself and your family safe.
Do you know the best way to get emergency alerts and warnings? If you have a disability that affects your communication, identify the best ways for you to access emergency information in advance. What television stations in your area offer live captioning? Can you sign up for text, email, or telephone alerts through your municipality? Keep phones and communication devices charged, and always have a backup way of learning about emergencies. Some options for alerts and warnings are listed below.
Television stations with live captioning
Emergency Weather Radio (some can support strobe lights, bed shakers and text readouts)
Wireless Emergency Alerts – If you are in an area where the alerts are available and have a cell phone that is equipped to receive them, you may automatically receive a text message when an emergency alert is issued.
Smartphone applications – Many smartphone apps will provide text and audio weather alerts. You can set the locations and types of alerts you would like to receive.
Social Media – If social media is accessible for you, look for local emergency management agencies and news stations that also use social media to broadcast alerts and warnings. Save these organizations to your ‘favorites’ or begin ‘following’ them in advance.
Local warning systems – Many localities have emergency alert services that will provide alert information to you in a format of your choice. Most locations can send messages to email addresses, mobile phones (text or voice), landline phones, TTYs and Braille readers. Contact your local emergency management agency to learn what options may be available in your community.
Support network- Talk to trusted friends, family and neighbors and create a plan to notify each other of emergency information.
After determining how you will be notified of an emergency, put together an emergency plan and kit. Involve your friends, family, neighbors, support staff and anyone else that you trust to assist you. Determine how you will contact them in an emergency and what they can do to assist you. Think about where you will take shelter in your home if you need to. Also consider any services you need (personal care assistance services, dialysis services, etc.) and how you will access those services in an emergency. Talk to provider agencies about their emergency plans Learn more about preparing for severe weather at www.ready.gov/severe-weather.
Project Freedom at Lawrence tenant Rebecca “Becky” Scheick earned three medals last month at the Special Olympics.
This is the unfortunate price we pay by being parents with disabilities. Before President Obama left office, the White House sponsored a conference on parenting with disabilities because more people with disabilities are paying that price nationally. The price can be minimal for some, higher for others, but well worth it to hear your son say “Happy Fathers’ Day, Dad!”
