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Connecting Passionate Volunteers to Meaningful Causes: Addressing Food Insecurity in NYC

/in , /by Pam Katz

By Andrew Pfadt-Trilling, Vivian Murray, and Joyce Minault (AHRC NYC)

New York City is a city of contrasts. It is the financial capital of the world while 1.4 million residents rely on emergency food programs. A place where luxury condominiums are built on the same block as people who don’t know where their next meal is coming from.

Last year, AHRC NYC was a recipient of a grant through the The Arc of the United States and the Corporation for National and Community Service to organize its first MLK Day of Service project to combat hunger and food insecurity. We saw this as a chance to look at neighborhoods where there is a real need, but also where there are passionate self-advocates and staff who want to be more connected and make an impact in their communities. We identified three neighborhoods (Crown Heights & Bushwick in Brooklyn; Lower East Side in Manhattan) and formed planning teams of staff and self-advocates that lived or worked in that neighborhood and asked: what if we planned a project that fought food insecurity, brought neighbors together, and strengthened community ties? Here is the story of how the Crown Heights team, B’lynx (Brooklyn Links Up) responded to that challenge.

B’lynx is a diverse team of people with and without intellectual/developmental disabilities, committed to enriching the Crown Heights community through innovation, passion, and fun. Since 2014, B’lynx has participated in community-based service projects and volunteer events with other local organizations.

The MLK Day of Service grant gave B’lynx the chance to develop as community organizers and take the lead in planning an initiative to bring people and organizations together to make a difference in Crown Heights. The team was excited to take on this role and when it came time to mobilize, self-advocates and staff began to hit the streets canvasing, recruiting volunteers, and spreading the word.

Recognizing that not everyone would be interested or comfortable doing the neighborhood outreach, the team made sure there were other ways for everyone to get involved and make an impact. Artists decorated boxes that were used for our city-wide food drives and distributed them to local businesses. Others created promotional materials such as flyers and bookmarks to raise awareness and recruit volunteers that were distributed to local libraries, cafes, and community centers. It truly takes a village to make something like this possible!

Volunteers organize food for distribution

The hard work of B’lynx paid off. On January 21st, 2019 over 50 volunteers came out in the harsh weather to help those in need, distributing over 500 pounds of food collected through the drive. They also provided hot meals to dozens of households through Rescuing Leftover Cuisine, a nonprofit organization that combats hunger and food waste by delivering excess food from restaurants to those in need. 

On top of the food-related volunteer activities of the day, B’lynx made sure the event also provided a space to showcase community partners and other opportunities to give back! Local organizations, such as community gardens and health centers, were present to share resources. There were arts and crafts tables for kids, healthy eating demos for all ages, and information of other volunteer opportunities in the neighborhood.

The MLK Day of Service has strengthened B’lynx even more and deepened their relationships in the Crown Heights community. This past summer they took an active role in neighborhood block parties, hosting arts activities for local children. B’lynx and the other change teams at AHRC NYC are already busy planning and looking forward to the upcoming 2020 MLK Day of Service, with the hope to help even more people!

two men, a patient and a doctor, seated and talking

Let’s Talk About Sexual Violence Against Men With Disabilities

/in , , , /by Pam Katz

Men with disabilities are twice as likely as those without disabilities to experience sexual violence. Yet few people know just how common it is, including health care professionals.

The Arc’s National Center on Criminal Justice and Disability® and the Board Resource Center recognize that health care professionals are in a front line position to educate patients with disabilities about sexual violence and how to report it. The project is releasing new training videos and other valuable online resources to give doctors, nurses, and other health care professionals the practical tools they need to have simple, direct, and honest conversations about sexual violence with male patients who have intellectual and developmental disabilities.

Health care professionals generally have little or no experience talking about sexual violence with this population. And men with intellectual and developmental disabilities may not know if they are victims of sexual violence, how to talk about it to their doctor, how to report it to authorities, or how to access healing services like counseling.

Talk About Sexual Violence provides tools that build the capacity of health care professionals to talk about this issue with greater confidence and lays the groundwork needed to empower patients with disabilities to talk openly about sexual violence, decreasing the likelihood of future violence.

As part of the second phase of the Talk About Sexual Violence project, The Arc and the Board Resource Center are proud to present:

“Survivors need to talk things out. We need a safe place to tell things and be heard. Listen to us, hear us, believe us. Let us talk about it as long as we need to. Let us be brave with you. We are getting out the pain, one conversation at a time.” – James Meadours, National Peer Advocate & Survivor

close up of medical form with stethoscope

Open Enrollment and Disability: What You Need to Know

/in , , /by Pam Katz

Disability Open Enrollment Week of Action kicks off Sunday, November 17, 2019 — but you can enroll until December 15!

The Arc believes that everyone, including people with intellectual and developmental disabilities, should have timely access to high quality, comprehensive, accessible, affordable, appropriate health care that meets their individual needs, maximizes health, well-being and function, and increases independence and community participation.

If you are uninsured or looking for more affordable health insurance, visit healthcare.gov or your state’s Marketplace or health insurance exchange. During the open enrollment period from November 1, 2019 – December 15, 2019, you can review private health insurance options and purchase coverage. People with low and moderate incomes may be able to get financial help to pay for premiums and other cost-sharing may be available for individuals and families, depending on the plan.

If you have a disability or health condition, here are key questions to ask:

  • Is there a broad range of health care providers included in the plan’s network?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent as other “physical” health needs?

How to get help:

Purchasing health insurance can be complicated. If you or your family member needs assistance, healthcare.gov can help. Each state has health insurance “Navigators” to assist with enrollment. Individual health plan information should be available on the website.

If you already have health insurance through the Marketplace, open enrollment is a good time to see if your coverage still meets your needs. It is also important to update income and household information to make sure you are receiving available assistance and to help avoid penalties, if your income has increased.

You can also sign up for insurance outside of open enrollment, if you lose your job, marry, divorce, or have a baby.

a student with books and a backpack.

Advocacy Groups File U.S. Supreme Court Brief Warning That School Vouchers Harm Students With Disabilities

/in , , /by Pam Katz

The Arc of the United States, The National Disability Rights Network (NDRN), The Council of Parent Attorneys and Advocates (COPAA), and a coalition of advocacy and legal services organizations represented by the law firm Clinton and Peed filed an amicus brief in the case of Espinoza v. Montana Department of Revenue asking the Court to uphold the decision made by the Montana Supreme Court invalidating Montana’s private school tax-credit scholarship program as it is harmful to students with disabilities.

While families petitioning the court suggest that the program would help students with disabilities, school vouchers and tax-credit programs like Montana’s actually hurt students with disabilities by redirecting public funds to private schools that are largely unbound by the federal laws in place for over four decades that protect the rights of students with disabilities.

When students with disabilities use vouchers or tax credits to attend a private school, typically they forfeit their rights mandated by federal law —including the right to an appropriate, individualized education—because the statute’s key provisions do not apply to private schools. At least seven states have voucher programs that require parents to explicitly waive all or most of their disability rights protections under federal law to participate. In other states, parents often do not realize the rights they are forfeiting: 83% of parents of students with disabilities in such programs report that they receive inaccurate or no information on the loss of those rights, according to a federal watchdog report.

The Court has scheduled to hear oral arguments on January 22, 2020.

Shira Wakschlag, Director of Legal Advocacy, The Arc explains, “For decades, The Arc and its chapters across the country have been at the forefront of establishing and strengthening the right to a free and appropriate education for students, including those with the most significant disabilities. Voucher and tax-credit programs diminish the resources and effectiveness of public school systems in which they operate, leaving students with disabilities behind in the process. We simply cannot afford to go backwards.”

Curt Decker, Executive Director, NDRN explains, “NDRN and its members, which comprise the protection and advocacy network, have long fought to ensure students with disabilities receive the services to which they are entitled. We are very disturbed by the efforts around the country to divert funding from public schools to fund school voucher and voucher-like schemes, including Montana’s tax-credit scholarship program at issue in this case. In our experience, these voucher schemes often require students with disabilities to waive their rights under key special education laws in order to access private schools. Children with disabilities should not be made to choose between attending an underfunded public school and giving up their civil rights to attend a private one. That is an outrageous proposition.”

Selene Almazan, Legal Director, COPAA explains, “Nearly 7 million students with disabilities rely on federal civil rights laws’ protections to ensure access to the general curriculum, to instructional supports, services, and accommodations, and to be held to the expectation that they can achieve commensurate with their peers. If the Montana voucher and tax credit program is allowed to continue, students with disabilities will be stripped of these vital protections, thus putting them at risk of segregation, receive limited supports and services and experience low expectations at school and ultimately in life. We urge the Court to uphold the Montana Supreme Court Decision in support of students with disabilities.”

Issue Before the Court in Espinoza v. Montana Department of Revenue: Whether it violates the religion clauses or the equal protection clause of the United States Constitution to invalidate a generally available and religiously neutral student-aid program simply because the program affords students the choice of attending religious schools.

Joint Amicus Brief: The joint brief establishes that for students with disabilities, the proliferation of private-school voucher and tax-credit programs, including the Montana program at issue in this case, risks restoring a bygone era—during which these students had no right to an education, received no individualized support or services, and were segregated from their peers.

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The Importance of Paid Leave: A Sibling Perspective

/in , , , /by Pam Katz

By Nayma Guerrero, Member of The Arc’s National Sibling Council

My family is everything.

Nayma and her family

My younger brother is 23 years old. He loves computer science, animation, and art and design. He also enjoys working out at the gym. Things are sometimes challenging for my brother, who has autism, intellectual disability, attention deficit disorder, and depression. Then there’s my sister. Like many 14 year olds, she loves the mall. She also plays soccer and basketball, and likes playing with her dolls. I admire my sister for sticking to it at school, despite having learning disabilities.

Like a lot of families, the day starts at my parents’ house in controlled chaos. My mother takes on what seems like the biggest challenge of the morning shared by moms everywhere: getting my brother and sister out of bed! A true supermom, my mother helps both of them get their school clothes together and makes sure they eat breakfast every day. She truly believes breakfast is the most important meal of the day. After they eat, my mother drives my brother and sister to school before taking care of the grocery shopping and errands.

Both of my parents are very hard workers and make sure my siblings’ needs are met every day. My father works fulltime, so my mom is usually the one who is taking care of my brother and sister.  My brother requires a lot of care, attention, and daily reminders to make sure he’s dressed, gets to school on time, and takes his medication.

A few years ago, my mother ended up in the emergency room. It turned out to be life threatening. My mother needed emergency surgery. We were shocked and worried as any family would be. After her surgery, we were told my mother would need to be on bed rest for about two weeks minimum with little movement. She would need a lot of assistance to get around the house, use the restroom, and shower. We were concerned for my mother but also for my siblings.  My mother is the person my brother depended on the most. And my sister was only 10 at the time.  

My father and I realized it was up to us to help my mother, my brother, and sister. For my father, taking time off meant he didn’t get paid and it was already hard for my family to make ends meet – still is.  I was also working hard, but not getting full time pay or health benefits of any sort. I was working just under 40 hours a week and therefore, part time. Calling off also meant no pay for me. It was really hard for my father and myself to work out a schedule where we could both help my brother with his needs and care for my little sister and my mother. It was also hard because my brother has a difficult time trusting other people, so he needed us. Sometimes, there is just no substitute for family.

Now imagine what it was like for us to shift to relying on one income – we had to save every penny for rent and bills, that’s it. I didn’t know how I was going to make my car payments. We were barely getting by.

Paid leave from our jobs would have helped my family at a time when we needed it most. If I would have had access to paid leave, I would have been able to help my family without losing my pay. My father wouldn’t have had to call out of work with no pay and risk losing his job. I also wouldn’t have had to go some days without pay. I was also scared that my job was going to fire me because I had to call out. With paid leave, we would have been able to provide my brother and sister with better care, while my mom recovered from surgery.

There are many families like mine. When the unexpected happens, family members need to be able to be there for each other – and still keep their jobs.  The U.S. needs a paid leave system so that families like yours and mine can care for loved ones when they need our help.

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The Arc Applauds Commutation of Bobby Moore Death Sentence

/in , , /by Pam Katz

The Arc applauds the new ruling by the Texas Court of Criminal Appeals (TCCA) that Bobby Moore is a person with intellectual disability and cannot be executed; commuting his sentence to life in prison.

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability and banned their execution as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. The Court’s 2017 and 2019 decisions in Moore v. Texas have strengthened this precedent by emphasizing the need to rely on well-established clinical standards – rather than stereotypes – in making intellectual disability determinations in death penalty cases. The Arc filed amicus briefs on Mr. Moore’s behalf when he first went before the U.S. Supreme Court in 2016 and again when his case was remanded to the TCCA in 2017.

“The appeals court decision is a major victory for people with intellectual disability in the criminal justice system and it finally affirms what The Arc and our allies have long asserted: Bobby Moore met the criteria for intellectual disability and his death sentence violated his Constitutional rights under the Eighth Amendment prohibiting cruel and unusual punishment,” said Peter Berns, CEO, The Arc. “We hope the Moore case serves as a loud and clear reminder to the court system that the Supreme Court banned the execution of people with intellectual disability 17 years ago, recognizing their risk of wrongful execution. It is a risk we cannot – and will not take.”

a family with two young girls poses in front of trees and smiles

The Arc Calls for Action on Paid Leave

/in , , /by Pam Katz

In honor of National Family Caregivers Month in November, The Arc is raising awareness of the issue of paid family and medical leave and its importance from the perspective of sibling caregivers of people with intellectual and developmental disabilities (IDD).

The Arc is sharing a new and compelling family story to illustrate the urgent need for a national and comprehensive paid leave system that includes siblings.

One in five Americans has a disability. The caregiver crisis is hitting these families in a uniquely difficult way, while paid family leave proposals have stalled in Congress far too long. Without paid leave, families face a cruel choice: the health and well-being of a loved one with a disability – or working to make ends meet.

The Arc’s Family & Individual Needs for Disability Supports (FINDS) survey shows the need for family and medical leave policy reform and reveals that 80 percent of people with IDD live with a caregiver who is a family member.

“We call on Congress to pass inclusive paid family and medical leave legislation that recognizes the important role of all family caregivers. People with intellectual and developmental disabilities and their families often experience greater financial insecurity and are more likely to face barriers to employment, making the impact of unpaid time off particularly devastating,” said Peter Berns, CEO, The Arc. “Siblings are increasingly taking on the role of primary caregiver, as parents and grandparents age and become unable to care for children and grandchildren who have disabilities and important care needs.”

Please find Michael’s story and other paid leave stories here.

Four siblings smile and link arms together, smiling at each other

Congressional Testimony: The Direct Care Crisis

/in , , /by The Arc

The Arc’s Senior Director of Public Policy, Nicole Jorwic, testified during a Congressional briefing on “The Hidden Crisis of Care in the U.S. – Addressing the Homecare Workforce Shortage” Friday, November 1. Jorwic explained the impact of the direct care crisis and how it hurts direct support professionals and people with intellectual and developmental disabilities and their families, including her own.

The Direct Care Crisis: In Congress, On the Road, and at Home

By Nicole Jorwic, Senior Director, Public Policy

In my role at The Arc, I am lucky to spend a fair amount of my time on the road speaking and meeting with our chapters, families and individuals with disabilities. Nearly everywhere I go, the number one issue that I hear about most is the workforce crisis when it comes to serving individuals with disabilities.

People with intellectual and developmental disabilities (IDD) often need some extra support to be a part of their community. The help can include supports in personal care, communication, household tasks, building relationships, and navigating the community. The work that direct support professionals, or DSPs, do is invaluable to the disability community and the service system that relies on their abilities to keep people out of more costly, restrictive, and often segregated institutional settings.

The word “crisis” doesn’t really do it justice – having a skilled, properly trained and fairly paid workforce is the linchpin for success for so many people with disabilities to live the independent life that they choose.

To illustrate the crisis, consider these statistics for direct support professionals:

  • $11.76 average hourly wage
  • 46% average state-wide turnover rate
  • 38% of DSPs left their position in fewer than 6 months (Hewitt et al., 2018)

How, in 2019, after decades of progress in disability rights, are we in this mess?

The lack of investment from the top creates the crisis.

There has been a lack of federal investment for decades and states have not picked up the slack. The rates service providers receive to ultimately pay DSPs do not take into account the wages of competing occupations, the need for benefits, and the actual costs of services. What has resulted are rates and therefore wages that have been flat for decades, without even cost of living increases.

I also know what this looks like from a personal perspective.

My brother Chris is 30 and has autism. He lives in the suburbs of Chicago with my Mom and Dad who both work full time jobs. Chris has a series of three to four DSPs who come throughout the week to get Chris out into the community. He spends time volunteering with the elderly, works out to stay healthy, and is working on finding community employment.

It sounds great, right? And it can be, but it all hangs on a thread. In my home state of Illinois where the average DSP wage is even lower at under $10 per hour, a very thin thread.

And I was at one of those events for a chapter over the summer, hearing about the workforce crisis when I got a text from my mom that Chris’ “main DSP”, meaning the one who was with him the most, had quit, not because she didn’t love Chris, or the work, but simply because she could make more doing something that didn’t have the same responsibilities.

That happened more than two months ago, and a new DSP still has not been hired, so now my Mom can’t work as much, or other family members help us cover. But not everyone can make those changes.

It also has a very real impact on the progress that my brother can make in his own life. I asked him to share his thoughts and he typed “I want more support, I am very frustrated and I feel that my progress is being hurt. I need more regular scheduled DSPs and they deserve to earn more because of the work they do and so they stay.  I have no patience anymore.” This breaks my heart as a sister and as a professional. The stress I hear in my mom’s voice every time I ask for an update is what I hear from every individual with disability, family member and provider group that I talk to.

An increase in federal funding to support DSP wage increases is the most direct way to make a significant impact on the workforce crisis. The Arc also supports the development and implementation of a national credentialing system for DSPs to professionalize the industry and programs that directs qualified people into the industry via pipeline programs.

These are all policy angles that we will continue to work on because we know the real-life impacts of the continuation and worsening of this crisis.

We must do better for Chris, families like mine across the country, the DSPs who want to work in this profession, their families, and society as a whole.*

*Story is shared with Chris’ permission