From Norman’s Desk – November 2018

Norman A. Smith, Associate Executive Director

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
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“My Two Cents” – November 2018

Tim Doherty, Executive Director

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

Tim Doherty, Executive Director

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

Tim Doherty, Executive Director

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

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

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

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. 

Norman A. Smith, Associate Executive Director

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

Tim Doherty, Executive Director

“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.

My Two Cents – July 2018

Well it’s that time of year again, when the Governor and the State Legislature argue over the State Budget, which must be passed by June 30.  If not, then the government is supposed to shut down.

Tim Doherty, Executive Director

Now the Governor has said that he doesn’t want to pass a budget that doesn’t have a realistic forecast that shows that the revenue to support the budget will indeed come in.  He acknowledges that other governors have played games with the budget, often presenting very optimistic forecasts as to the amount of revenue that the State would generate, only to fall very short of that forecast,  thereby having a severe shortfall at the end of the year.   This is why he advocates for higher taxes which only further burden the citizens of New Jersey– A state that is the sixth most expensive state in which to live.

The opposition both from the Democrats and Republicans are urging some combination of tax cuts also with some tax increases.  The problem is that the Governor has laid out such ambitious goals and has promised increased spending almost across the board, that there doesn’t seem to be any amount of money sufficient to pay for his new programs.

Along with this scenario, is the fact that the Governor wants to confiscate the money which is still in the municipal housing trust fund accounts, to help balance his State budget.  These funds were raised as fees paid by for profit developers when they build commercial and market rate housing.  They cannot be used for anything else but affordable housing, however, in the past governors have taken similar monies from dedicated fund accounts.  Witness the gasoline tax, which was only    supposed to fund repairs to our roadways, but has often found itself being put into the general fund to balance the budget.  As a result, this past year, that tax was raised.

Furthermore, as a result of the Supreme Court’s ruling with regard to COAH and the municipality’s affordable housing obligations, municipalities need those funds more than ever now, in order to fund their required housing needs.  Without these funds, towns could legitimately tell the court that they are unable to comply because the State has confiscated their housing trust funds.  These funds   survived the several attempts of the Christi Administration to scarf them up, so it would be a shame for the new Democratic governor to now arbitrarily do that now.

So, a call to action is needed.  Call you State lawmakers and tell them that you don’t want those funds put into the General Budget but to be used for what they were intended—and that is creating more affordable housing.

 

From Norman’s Desk – July 2018

Norman A. Smith, Associate Executive Director

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

From Norman’s Desk – June 2018

Norman A. Smith, Associate Executive Director

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!”

Follow me on Twitter @normansmith02

 

 


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?”

Research indicates that parents with disabilities and their families are overrepresented in the child welfare system. While parents with disabilities make up only 6.2 percent of all parents in the United States, a recent study found that 19 percent of children in foster care have a parent with a disability.

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.