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!
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.
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.
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.
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
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
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.
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 continues to grow our housing units by partnering with several local municipalities in Mercer County as well as those from across the State. Over time we have modified our housing design and amenities to better reflect the needs and wants of our tenant consumers. Our target population has also changed from strictly the physically disabled to also include “regular” non-disabled folks and their families. So, now, we do house families with children and folks who may not be disabled. This is because our State, New Jersey, like so many other states, have recognized that inclusionary housing, that is disabled and non-disabled provides a better more natural and wholesome environment for everyone to live.
Although recognizing this kind of change, we still have continued to make our disabled population a priority. That means we continue to build and design all of our units as accessible, so that someone who uses a wheelchair can easily manage any of our apartments. Anyone can use the roll in showers, the lowered countertops and the accessible kitchens and appliances. Our overall site topography is also created so that there are no serious hills or slopes for which a wheelchair would find difficult to manage.
We also are trying to use less land as the large sites are also much more expensive to develop….more roads and sidewalk to build and maintain. So, in order to maintain our numbers, we are designing a three story building, with elevator, that can provide cost savings overall. We are hoping that these changes will enhance our building design while creating a lower overall cost.
The emphasis on cost reduction is because of the change in the new Federal Tax Law, which has reduced the tax liability for large companies and investors from 35 % to 21%. By doing so, this change has reduced the value of the Tax Credit pricing over .05 Cents on the dollar, which overall can mean we lose about $500,000 for our projects. This loss means that we need to become much more efficient, overall, when budgeting for our projects. The trick here is to figure out what to eliminate without compromising quality and valued amenities.
By building a three story building, rather than a two story, and reducing the total number of buildings from six to four, we hope to save around 20% of the cost of our project costs. These are changes that we need to do, in order to keep within our available funding. Along with these negative pressures on funding, we are seeing more and more demands from local towns to fulfill their affordable housing requirements, which is a positive change. The Affordable Housing issue is currently being dealt with in the courts, with judges negotiating the final numbers. And from what we are seeing, those towns that don’t settle along the way, are getting higher final quotes on housing than they like. This is what is fueling the current demand for affordable housing in New Jersey towns.
So, Project Freedom continues to change and adapt to the current housing market in order to continue to serve our Mission.
As we start the new year (2018), it has been over two years since the New Jersey Supreme Court took the power of making decisions regarding affordable housing, out of the hands of the COAH Board, and into the respective courts of jurisdiction. So, the question to be asked and answered is has this been a better alternative moving us forward, or has it just delayed and set the affordable housing issue back to the drawing board. My answer to that is that some progress has been made although it has taken a lot of time to get where we are right now.
A little history is in order to set the stage. Sometime in 2008, the COAH board had set out to establish its third round of rules for affordable housing. This had been done twice before, ergo first round and second round. The third round rules passed however were challenged in the courts and after several years, portions of those rules were rejected, and a portion was upheld. COAH then attempted again to revise their rules and after several false starts, a new set was proposed by the administration, who was under the judicial gun to make a decision. Finally, the COAH Board did vote to turn down those proposed rules, in spite of the courts pressure, which brought the issue before the NJ Supreme Court. That Court decided that COAH, now was defunct and not able to operate, so that all issues of affordable housing would have to be solved within the court of jurisdiction for that town. As a result, most towns filed their declaration of judgement in court, which has given them immunity from a builders lawsuit until their cases could be heard.
So, that is what has been going on for the past two years, with towns having to submit their new COAH plans which now are to go to the year 2025. ( 2015 to 2025 – 10 years ). Some towns have combined their efforts to fight these new requirements, while others have worked to settle. Overall, the majority of towns have worked to settle these lawsuits by submitting their new affordable housing plans. As a result, Project Freedom has gotten called into some of these towns for new future projects. One of those new towns is Robbinsville, coincidently where Project Freedom built it’s very first housing project. Another town is Hamilton, again where we also have a presence. Both towns recognize the demand for barrier free housing, and have been supporters of our disabled clients.
This certainly is gratifying to know that these two towns think that much of Project Freedom to include us in their new housing plans for the future. This is also a result of having the issue of affordable housing finally being settled within the structure of the court system. In the past, when the Towns would come before COAH, they could easily delay their responses and would take months if not years to address what should have been settled months earlier. And since COAH had no real police power, there was basically nothing that COAH could do to make them comply.
“My Medicaid, My Life” by Alice Wong, New York Times — Opinion/Disability Section, May 3,2017
I am a Medicaid welfare queen. When Republicans talk about safety net programs like Medicaid, Social Security and food stamps, they evoke images of people like me gabbing on their smartphones, eating steak and watching TV from the comfort of home. Political rhetoric and media coverage paints us as unmotivated and undeserving individuals, passive consumers of taxpayer dollars who are out to “game the system,” taking resources away from hard-working people.
The reality of being a disabled person on Medicaid is far more complex and nuanced. Many people do not even know the difference between Medicaid and Medicare and simply consider them “entitlement programs,” as if tax breaks and corporate subsidies aren’t entitlements by another name. Medicaid is more than a health care program. It is a life-giving program.
Like the thousands of people sharing their stories at town halls about how the Affordable Care Act saved their lives, I am sharing my Medicaid story to illustrate its value and the potential consequences of “reform.”
I am an Asian-American woman with a disability and a daughter of immigrants. When I turned 18, my dad told me that I needed to make an appointment at the county office and apply for Medicaid. Living in an affluent suburb of Indianapolis, I was indignant. Medicaid was for “those people,” the “indigent.” I learned that my parents paid exorbitant monthly premiums for my health care. Only one company in our state would cover me because of my pre-existing condition (spinal muscular atrophy, a congenital motor neuron disease). I had no idea of the financial pressure placed on our family for basic health insurance because of my disability.
I graduated from high school in 1992, two years after the Americans With Disabilities Act was passed. Learning about disability history and realizing I was a member of a protected class encouraged me to imagine and create the life that I want. Once I got over myself and realized I had a right to Medicaid, it made a difference immediately.
I began to receive several hours a week of services to help me with personal care. When I went away to college I was able to hire attendants and live independently for the first time. It was an exhilarating taste of freedom that showed me a glimpse of what was possible. Before Medicaid, my family members, including my siblings, provided all of my care, including bathing, dressing and toileting. Now I had choices and the basic human right of self-determination.
Unfortunately, Indiana made cuts to Medicaid the following year that resulted in fewer hours of services. Our family couldn’t manage both tuition and private pay for personal care, so I made the heartbreaking decision to leave the school I loved and move back home.
As I commuted to a school nearby, I learned about the activism by disabled people that led to expanded accessibility and services across the country, California in particular. Moving to San Francisco for graduate school in the late 1990s afforded me the privilege of being in a state with a program that allows me to direct my own personal care services, including hiring and training my attendants. This program, In-Home Supportive Services (IHSS), is funded by a combination of local, state and federal funds. Without it, I wouldn’t have been able to go to school, work or volunteer.
By no means is it fun or easy receiving Medicaid. I follow strict eligibility rules and guidelines. I’ve been able to work as a researcher thanks to a state Medicaid Working Disabled Program where I can maintain eligibility by paying monthly premiums. Over time, my disability progressed and I needed substantial care that would normally take place in an institution if I didn’t have any help. I became eligible for additional hours of service through a Medicaid waiver so that I could remain in the community and stay out of a nursing home, at a considerable savings cost for the entire system.
When you are disabled and rely on public services and programs, you face vulnerability every day. This vulnerability is felt in my bones and my relationship with the state. Fluctuations in the economy and politics determine whether my attendants will receive a living wage and whether I’ll have enough services to subsist rather than thrive. The fragility and weakness of my body, I can handle. The fragility of the safety net is something I fear and worry about constantly.
Although the American Health Care Act — the Republican attempt to replace the Obama administration’s Affordable Care Act — failed, the assault on poor, disabled, sick and older people continues in other forms. The Centers for Medicaid and Medicare Services can weaken regulations, place limits on the services states provide without legislation and add new work requirements. States can request block grants and changes to eligibility and regulations from the federal government directly. Block grants and per capita limits will force states to reduce or eliminate services to make up the difference from the federal government, affecting millions of people.
“Program flexibility” is code for the decimation of Medicaid that will put lives like mine at risk. Some people with disabilities may have to live in nursing homes if community-based services wither away under this flexibility and reform. We cannot disappear again after a history of segregation and institutionalization. When Republicans talk about freedom and choice, they don’t realize that Medicaid gives those very things to people with disabilities.
This past March marked my 25th year of being a recipient of Medicaid. When I was young, I felt shame and embarrassment at being one of “those people” on benefits. Today I am unapologetically disabled and a fully engaged member of society. None of that would be possible without Medicaid.
Every day I resist forces that label me as the Other or a scapegoat for society’s problems. With the disability community, I share our stories and speak out against threats to our future by using my privilege and tools such as social media. I hope my story will continue for decades to come.