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A Lifelong Advocate Asks Families to Speak Up

/in /by Guest Blogger

Ginger Pottenger has been a member of The Arc – at either the local, state, or national level – since the early 1970s. She lives in Arizona, near her daughters, Kandi and Kristi.

How did you get involved in the disability advocacy movement?

I was an advocate before I knew it what that really meant. My daughter Kandi, who will soon turn 51, was diagnosed with “mental retardation,” as it was known then, when she was 3. The diagnosing doctor’s advice was to take her home and love her. And that’s what we did. We stumbled into inclusion. We were lucky to be in a community and at a pre-school that saw the value in her being included with kids without disabilities. When Kandi started grade school, someone asked me if we were involved in The Arc. So I went to my first meeting at my local chapter, and before long, I was serving on their board.

As a parent, what were some of the early struggles and triumphs you encountered?

I didn’t fully appreciate it then, but Kandi’s inclusion in pre-school was a triumph at that point in time. This was still the era of putting kids in institutions. But we had our ups and downs – I had to push hard to have Kandi walk at high school graduation. Then as a young adult, living a few towns away and working in the community, we had some serious issues with the staff.

You have been both a “professional advocate”, serving as an executive director of chapters of The Arc and on boards and other positions, and a parent to Kandi. How have those experiences shaped how you advocate?

I have seen the power of the personal, nitty gritty story, on public policy. People are too scared to get on the phone or get in front of their elected officials, and tell them the consequences of their policy decisions. Or people will think they don’t have time to advocate. And I understand raising a family, including a child with special needs, maintaining a career, a marriage, a life – it all takes time. But you’re in it for the long haul as a parent. Share your hopes and dreams for your family, the struggles, your fears.

What’s your biggest concern today for the future of Kandi and other people with IDD?

What is going on at the federal level with funding and the structure of Medicaid scares me to death. And it should scare others into action. The threat to our funding is real and if we lose the supports that Kandi has, our options are bleak. Chapters of The Arc should be the place they go for training on how to advocate, for encouragement from chapter leaders and other families.

How do you suggest presenting your story?

I don’t sugarcoat it – I just met with my state senator recently, and I told her – I can’t die not knowing that the supports will be in place for Kandi. I’ve worked too hard for it to all go away when I’m not here. Right now, she’s in a good place, living in a townhome, with some supports, and has supported employment in the community. But what does the future hold for her if public policy decisions change the way the money flows?

I’ve been doing this for many years, and I still write out what I want to say, and I practice. I may only get 10 minutes with that important person, and I’m going to make an impact. I tell them about our lives and why these supports are so important. I want them to understand and remember that our lives are impacted by their policy decisions.

What else do you think makes an impact?

I’ve also dug into the dollar and cents of what Kandi receives, to demonstrate that the investment is going a long way to her independence. I contacted our Division of Developmental Disabilities office in Arizona to get the dollars for Kandi’s supports. I had them break it down between federal and state dollars and type of support. Kandi has support in her house and supported employment supports at work. I then took those numbers down to what the state and feds pay a day so Kandi can have a real life in the community. I compared the cost to more restrictive settings and it is so much less money!

What do you do to develop a relationship with your elected officials?

It begins by visiting with them. I take notes about my interactions with public officials. Thank them for what they’ve done right. The disability community is thrilled with the passage of the ABLE Act. And it was the most bipartisan thing Washington has done in a long time! You have allies where you least expect it.

Any final thoughts to share?

Families can’t wait for the crisis to think about the future. It blows my mind how many people with disabilities the same age range as Kandi, whose families haven’t considered what’s going to happen when they die. The Arc’s Center on Future Planning is going to be a great resource to them, and so will their local and state chapters of The Arc. These families need to face reality – so much has changed for people with IDD in society. We can’t go backwards, and they’ve got to step up.

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Supreme Court Delivers Major Victory Against Housing Discrimination

/in /by The Arc

This week, the U.S. Supreme Court issued several landmark decisions for all Americans, including people with intellectual and developmental disabilities and their families.

In a 6-3 opinion in King v. Burwell, the Supreme Court held that federal tax subsidies are being provided lawfully in those states that have decided not to run the marketplace exchanges for insurance coverage. This is a huge win for the Affordable Care Act and people with disabilities throughout the country.

Less prominent, but a tremendous victory for civil rights, is the Supreme Court’s 5-4 decision in Texas Department of Housing and Community Affairs v. Inclusive Communities Project, Inc., a ruling that will support the continued progress of people with disabilities and other minorities toward full inclusion in all aspects of American life.

In this case, the Supreme Court ruled that housing discrimination is illegal, even if it is not intentional. This decision upholds a longstanding principle under the Fair Housing Act, known as “disparate impact.” By finally settling the question of whether the language of the Fair Housing Act allows for claims based on disparate impact, as the Civil Rights Act of 1964 does, the decision supports our nation’s progress toward integrated, inclusive communities that foster opportunities for all Americans.

In the case, a fair housing advocacy organization sued the state of Texas, alleging violations of the Fair Housing Act for awarding federal tax credits in a way that kept low-income housing out of predominantly white neighborhoods, thereby denying minorities access to affordable housing in communities where they might access better schools and greater economic opportunity. The state was not accused of intentionally excluding African-Americans from predominantly white neighborhoods, but of structuring its tax credit assignments in such a way that they had a discriminatory effect.

At stake in this case was not only the claims brought against the state of Texas, but also whether the key legal protections provided under disparate impact would continue to be available under the Fair Housing Act.

As noted in the Supreme Court’s majority opinion, Congress enacted the Fair Housing Act of 1968 following the assassination of Dr. Martin Luther King, Jr. “to eradicate discriminatory practices within a sector of the Nation’s economy.” As amended, today the Fair Housing Act prohibits discrimination in housing on the basis of disability, race, national origin, religion, gender, and familial status.

Disparate impact is a legal doctrine that holds that the Fair Housing Act and other civil rights laws prohibit policies and practices that discriminate, whether or not the policies were motivated by the intent to harm a particular group.

For over 40 years, the disparate impact doctrine has been a key tool protecting the rights of people with disabilities, people of color, and other groups covered by the Fair Housing Act and other civil rights laws to have equal opportunity to live and work in the communities that that they choose. It has formed the basis for federal regulations and has been used extensively by the Department of Justice, the Department of Housing and Urban Development, and civil rights organizations to fight housing and employment discrimination across the United States.

The ability to allege disparate impact under the Fair Housing Act has been upheld by 11 federal appeals courts, but the Supreme Court has never before issued an opinion in a fair housing disparate impact case.

Fortunately, a majority of the Supreme Court upheld the disparate impact standard, finding that recognition of disparate impact claims is consistent with the Fair Housing Act’s central purpose.

This week’s decision marks an important milestone in our nation’s path toward integration and inclusion. It’s a major victory that shores up the progress that people with disabilities and civil rights organizations have made over the last four decades, and strengthens our ongoing work to end discrimination in all its forms.

To learn more:

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The Arc Applauds Supreme Court Ruling Upholding Subsidies to Purchase Health Insurance Under the Affordable Care Act

/in /by The Arc

Washington, DC – In its 6-3 King v. Burwell decision, issued today, the U.S. Supreme Court held that federal tax subsidies are being provided lawfully in those states that have decided not to run the marketplace exchanges for insurance coverage. This is a huge win for the Affordable Care Act (ACA) and people with disabilities throughout the country.

The case was brought by Virginia plaintiffs alleging that the ACA forbids the federal government from providing subsidies in states that do not have their own exchanges. These exchanges allow individuals without insurance to shop for individual health plans. Some states created their own exchanges, but others allowed the federal government to run them. Approximately 85% of individuals using the exchanges qualify for subsidies to help pay for coverage based on their income.

“Today’s Supreme Court ruling upholding the subsidies to purchase health insurance in the federal exchanges is good news for many Americans, including people with intellectual and developmental disabilities. This challenge could have weakened the law overall, threatening all the protections that people with disabilities gained in the landmark law. This ruling should end the effort to dismantle this law, and instead the focus should be entirely on effective implementation,” said Peter Berns, CEO of The Arc.

The ACA is important to people with disabilities. It expanded coverage and reformed insurance to end discrimination against people with disabilities and enhance access to health care. The private health insurance marketplaces allow individuals or small businesses to shop for coverage and potentially receive subsidies to help offset the cost of insurance. The subsidies are key to ensuring affordable coverage. The health insurance reforms, the protections from high premium increases or out-of-pocket costs, and the coverage of “essential health benefits,” including mental health care and rehabilitative/habilitative services and devices, help assure that people with disabilities have affordable health care that meets their needs.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, fetal alcohol spectrum disorders, cerebral palsy, and other diagnoses. The Arc has a network of more than 665 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Fatherhood: How Zachary Shapes My Life

/in /by Guest Blogger

Ray Morris is a father of two. Zachary, his 27-year-old son, has intellectual and developmental disabilities. Ray is the founder of Dads 4 Special Kids, a member of The Arizona Developmental Disability Planning Council and an Engineer/Paramedic with the Scottsdale Fire Department. This Father’s Day, we chatted with Ray about what it means to be Zachary’s dad and how Dads 4 Special Kids plays an important role in his life.

For you, what does it mean to be a father of a son with a significant disability?

I am blessed to be Zachary’s father, he’s the right son for me and I’m the right dad for him. It doesn’t mean things are perfect but we’re both growing. We share a special and unique bond that enables us to have a deeper love. Zachary didn’t do the typical things that a child does like play baseball or football. I had to learn his value system and what’s important to him. When I go into his room in the morning and he sits up and looks up or when he lays his head onto my shoulder and just relaxes, I know that he is happy by the way he responds to me and embraces me in his style. It is a privilege and honor to receive his love.

Society gets locked into the importance of being the mom or dad of an NBA player. That’s wrong. It is the relationship between the dad and the child that’s important. When you have a child with special needs, it’s not about the accomplishments of the child or about what he is going to do. It’s an unconditional love for each other no matter what and supporting your child to live life to their level.

Did you always feel that way?

No, I went through a period of adjustment between what my life had been and the future vision I had for Zachary. Reality wrote another script. Zachary was born with a rare brain disorder and began having seizures around age four. I had to deal with my own shock and grief in my way. I had to learn to identify how I felt about Zach, how I felt about this new life, and take ownership of those feelings. Kelly my wife had to do the same, then we could help support each other deal the emotions.

Do you have other children?

Zachary is 27, and my other son, Tyler, is 25. Being Zachary’s father, I am very mindful of Tyler’s feelings and his upbringing. As Zachary’s sibling, I’m witnessing Tyler becoming a man with a great sense of compassion for others that accepts the individual not just the physical attributes.

How else has your life changed since Zachary was born?

Before Zachary was born, I used to love adventure racing. However, training for those events took too much time away from my family. Although that chapter of my life has closed, I am fully aware that self-care is important and I am now involved in recreational soccer. It takes less time away from my family and I can play in an adult soccer league with Tyler. I value my relationship with my wife, Zach and Tyler. I’ve learned that I can’t make them happy. However, I can be involved in the things that are important to them and support their happiness.

How has your wife supported you on this journey?

Kelly, my wife, wants to support me, but we deal with our emotions differently. It’s like my wife has a PhD in emotional expression, and I am in grammar school. We’ve had some challenges learning how to express and listen to each other’s emotions. It’s also challenging not to take ownership of each other’s emotions. Thanks to Kelly’s support, I wouldn’t be the husband, father, and man that I am today.

Tell us about Dads 4 Special Kids.

Dads 4 Special Kids is a support group for fathers. We have monthly meetings where dads can come together to talk. We also have one meeting that includes breakfast. Dads can bring their kids and not worry about how others will react if the kids start acting up. We also host marriage support and Resilient Relationship workshops. Another focus of the group is emergency preparedness planning in the family. I am a firefighter, so I know the importance of planning and informing the fire department of what will be needed before an event occurs.

The Arc recently launched the Center for Future Planning. What role do you see Dads 4 Special Kids playing as you plan for Zachary’s future?

My son Tyler has agreed to be a co-guardian of Zachary’s when my wife and I can no longer provide support. Tyler doesn’t know the ins and outs of the disability system. I want Dads 4 Special Kids (D4SK) to come alongside Tyler and help him support Zachary. D4SK aims to be an organization that will come along side dads who have children with special needs and walk with them through each stage of life. Our hope is that our experiences as fathers will better prepare new fathers who are beginning the journey.

Do you have any final thoughts for dads on Father’s Day?

I’ll be honest – having a child with a disability is challenging for a family. I want to provide fathers with the encouragement and support they need to address these challenges. We want to help these men step up to the plate and be prepared to navigate those up and down moments. We want those fathers to know they are not alone and that this journey will be unique and rewarding.

We thank Ray for sharing his story with us, and we wish him a very happy Father’s Day. For more information on Dads 4 Special Kids: www.d4sk.org. For more information on The Arc’s Center for Future Planning.

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Catching Some Waves With The Arc of the St. Johns

/in /by Guest Blogger

Innovations in programming at The Arc of the St. Johns in St. Augustine, Florida, are most often driven by specific needs and interests identified by the individuals they serve. That, of course, calls for listening, understanding, and the flexibility to step outside the norm.

Andy SurfingThe individuals there enjoy an active learning curriculum, with rotating classes in computer proficiency, culinary and health, structured physical education, arts and crafts, and Adult Basic Education in cooperation with the community college in St. Augustine. Children with special needs have the Therapeutic Learning Center, and young adult age 18 to 22 attend the St. Johns Community Campus, both charter schools.

Andy, a client of the chapter, has always been a curious and adventurous soul. The twenty-six year-old sees every class as a fresh and productive opportunity to experience and achieve very measurable objectives, most for the very first time. These therapeutic exercises are helping to train his hands and arms to stir a pot full of beans in Culinary Class, and to operate his own Facebook page in computer class, aided by an ocular directed mouse.

St. Augustine is an active coastal community in Northeast Florida, and The Arc of the St. Johns has seen a void as many men, women and children with intellectual and developmental disabilities (IDD) were missing the opportunity to enjoy the ocean and connect to a caring and sharing community of avid surfers. In response to the obvious need, and the urgings of Andy and his friends, The Arc created Surf Quest, a free monthly event with trained and enthusiastic volunteers who introduce adaptive aquatic recreation using specialized surfboards and flotation devices for anyone with a disability. The Surf Quest season opened in March 2015 and will culminate with the Black Ties and Board Shorts Awards Banquet in September.

Surf PoseAndy truly captured the hearts and attention of the entire crew of trained and experienced volunteer coaches, virtually all of whom had little or no experience or interaction with individuals with IDD. “Andy’s Crew” found the way to get Andy into the surf and on to a surfboard for a half-dozen rides. Jordan is his ride-along, and said, “Andy’s courage and effusive enthusiasm touched all of us, and we feel the same way about every one of these guys. We’ll be here for every event.

As for Andy, he has gone back to the computer to edit his video, adding a Beach Boys soundtrack. He has also created his shopping list for new wardrobe essentials for the next Surf Quest event: Some cool Ray Ban sunglasses, a pair of wild flower-print board shorts with a matching tank top, and a big, big, fluffy towel.

Find Andy’s action video on Facebook: Surf Quest – The Arc of the St. Johns. And, visit The Arc of the St. Johns website, www.arcsj.org.

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Summer Safety Tips

/in /by Guest Blogger

Co-authored by Vee Cecil and The Arc. Vee is a Wellness Coach, Personal Trainer, and Boot camp Instructor who lives in Kentucky with her family.

Summer is officially in full swing. And for many, that means spending more time outside on sunny days or trips to local pools or beaches. Swimming is a great way to fill up those summer days for many reasons. It is an excellent form of exercise and it has also been shown to have mental health benefits.

That said, any time individuals with intellectual and developmental disabilities (IDD) are around water, extra precaution should be taken. The National Autism Association pegs drowning as one of the leading causes of death among children with autism, and as Prevention1st.org notes, children with developmental disabilities are twice as likely to suffer an unintentional injury. One factor that further endangers individuals with autism and other intellectual disabilities is that they may not immediately understand the dangers of water. Especially in the case of children with autism, they may even be drawn to it or fascinated by it. This is why it is so important that parents, caregivers, and individuals with IDD and autism understand water safety practices. Adaptive swim lessons are given through the YMCA at various locations throughout the US. Click here to see a list of locations.

CDC’s recent issues of Vital Signs stated that the rates of melanoma, the most deadly form of skin cancer, have doubled over the last 3 decades. Applying (and remembering to reapply) sunscreen when outdoors, after getting out of the water, and especially during peak sun hours will help to prevent sunburn and furthermore skin cancer. Sunscreen should be at least an SPF of 15 and applied on sunny as well as cloudy days.

Monitoring how much time is spent outside on hot days is also very important. Overheating, (often called heat exhaustion or in extreme cases heat stroke), can be serious if the indicators are overlooked. Signs of heat illness that can occur when spending too much time outside can include:

  • Headache and dizziness
  • Nausea and vomiting
  • Red clammy skin
  • Not sweating when hot out (or stop sweating)
  • Seizures

If any of these symptoms are present, an individual should get out of the sun immediately and head indoors or to a shady spot. If available, a cool wet washcloth should be applied to their skin to help bring down their body temperature. To help prevent overheating make sure to drink plenty of water before, during, and after spending time outside. When planning outdoor events, keep in mind that the sun is at its hottest between 10am and 4pm, so having spots where individuals can go inside to cool down or seek some shade is vital.

Making sure those you care for are well informed about how to stay safe in the sun and near water this summer is essential. The Arc’s HealthMeet project has developed Water Safety, Sun Safety, and Heat Sickness flyers to post in and around your organization to help teach and reinforce these important lessons.

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The Arc on New Study That Highlights Housing Crisis for People With Disabilities on SSI

/in /by The Arc

This week, the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force released a study, Priced Out in 2014. This publication is released every two years. The 2014 results show that the national average rent for a modestly priced one-bedroom apartment is greater than the entire average Supplemental Security Income (SSI) benefit for a person with a disability.

Priced Out in 2014 highlights an ongoing barrier to community living for people with disabilities – the lack of accessible, affordable housing. People with disabilities deserve the opportunity to live independently in the community, though as highlighted by Priced Out in 2014, many who rely on SSI face severe obstacles to that opportunity. While progress has been made over the last several years with a new, integrated housing model under the Department of Housing and Urban Development’s Section 811 program, our nation still has a long way to go. Having a place to call home is a basic human right. The Arc is advocating for Congress to adequately fund the Section 811 project rental assistance program to help address the housing crisis for people with disabilities.

SSI provides basic income to people with significant and long-term disabilities who have extremely low incomes and savings. According to Priced Out in 2014:

  • In 2014, the average annual income of a single, non-institutionalized adult with a disability receiving SSI was $8,995, about 23% below the federal poverty level for the year.
  • As a national average, a person receiving SSI needed to pay 104% of his or her monthly income in order to rent a modest one-bedroom unit. In four states and the District of Columbia, every single housing market area in the state had one-bedroom rents that exceeded 100% of SSI.
  • In 162 housing market areas across 33 states, one-bedroom rents exceeded 100% of monthly SSI. Rents for modest rental units in 15 of these areas exceeded 150% of SSI.
  • People with disabilities receiving SSI were also priced out of smaller studio/efficiency rental units, which on a national basis cost 90% of SSI. In eight states and in the District of Columbia, the average rent for a studio/efficiency unit exceeded 100% of the income of an SSI recipient.

The full results of the study can be viewed on the TAC website.

The Department of Housing and Urban Development (HUD) Section 811 Project Rental Assistance (PRA) program is an innovative new model that allows states to effectively target rental assistance to enable people with significant disabilities to live in the community. Section 811 is the only HUD program dedicated to creating inclusive housing for extremely low-income people with severe disabilities, including SSI recipients.