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When People With Disabilities Are Forced to Choose Between Love and Needed Benefits: Marriage Penalties

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This Valentine’s Day, as many as 6 million couples will choose to celebrate their love by becoming engaged. But for many people with IDD, this dream of marriage forces them to choose between love and necessary supports to live independently.

When Jen Met Eddie…

Jen and Eddie at an advocacy event.

Eddie and Jen first met while planning an Oregon self-advocacy event in 2006. They both noticed each other across a table and shared with friends that they thought the other was cute. Eventually, Eddie and Jen started getting lunch together and going out – and decided to become girlfriend and boyfriend.

At lunch one day, Eddie popped the question for the first time to Jen. She asked him to come to Christmas with her and ask for her parents’ permission. At Christmas, Eddie popped the question again. “I got on one knee and asked her hand in marriage. It was quite nice.”

Both Eddie and Jen are long-time professional self-advocates and knew of the Social Security and Supplemental Security Income (SSI) marriage penalties. The marriage penalties are punitive rules that cut benefits and limit savings for married couples who rely on critical Social Security SSI benefits.

While they wanted to get married, Eddie and Jen were terrified of what getting married would mean for their lives.

Jen, who has a spinal condition that requires 24-hour medical assistance, explains, “I would lose my Medicaid and have to pay out of pocket for medical needs, and I don’t earn enough to pay out-of-pocket for medications or other medical equipment.”

Eddie, who lives in an adult foster home, adds, “It would impact me significantly if I lost my benefits. I would have no money to live on…. I would have no place to live, [as the rental costs in my county are very high].”

In the end, Jen and Eddie decided not to pursue a legal marriage—and this has meant giving up dreams, big and small.

Both Eddie and Jen wanted to foster a child and become parents, and they believed that they would be great parents to a little boy or girl. However, without a legal marriage, this dream seemed far away. Now in their late 40s, they are not sure if it could ever happen.

And, while Eddie and Jen are committed to each other, not having a legal marriage means not having the legal backing to make medical decisions for each other if needed. According to Jen, “we’d like to [be able to] make medical decisions for our partner.” But, without the legal standing, Eddie and Jen may not be able to do this.

For the past several years, Eddie and Jen have been advocating to remove this unjust rule that no couple should have to deal with.

 “It’s an unfair [rule] that has been around forever. We should be able to [get married and not worry about our benefits], just like everyone else. People don’t understand that people with disabilities are just like everyone else. We pay taxes, we work, [and] we contribute to society.”

Jen and Eddie’s story is one of many. Married people with disabilities often experience penalties that force the couple to give up necessary benefits to marry. This may mean taking a pay cut, working less, or having to quit a job altogether.

No one should have to decide between being legally married and getting the support they need to live in the community.

The United States Capitol Building

The Disability Community Must Once Again Show #WeAreEssential

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By: Nicole Jorwic, Senior Director of Public Policy, The Arc

After being all but ignored in the first three legislative packages that Congress has passed to address the COVID-19 pandemic, the disability community must rise up. We are once again fighting for our lives in Congressional negotiations—this time during a global pandemic. And the outcome will impact the services people with disabilities rely on, severely strain systems that provide those services, and may close down service providers all over the country that support people with disabilities to live the lives they choose.

This is far from the first time in my five years in Washington, DC, that I have watched Congress overlook the disability community. In 2017, the year Congress tried again and again to cut funding to Medicaid, a program that people with disabilities rely on for supports and services, we made them pay attention. But it took people with disabilities and their families coming forward to share their most personal stories, and some literally putting their bodies on the line, to show Congress that Medicaid means life and death. Together we were strong enough to hold off the full repeal of the Affordable Care Act, protect the integrity of the Medicaid program, and show the power of our community.

And, again, it seems the issues that matter to the disability community are being ignored. Our chapter network is on the front line of this pandemic: some of the people with disabilities they serve have passed away from COVID-19, and others don’t have the supplies for staff to safely serve or quarantine. The direct support professional, or DSP, staff often help people with disabilities with very personal tasks that can’t be done from six feet away, yet the personal protective equipment (PPE) necessary to do these tasks safely is scarce. And in the coming weeks and months, we know that some service providers will be forced to close, leaving families like mine with nowhere to go.

But the fight to save Medicaid in 2017 showed that when we band together as one voice, we can make things happen.

Despite the magnitude of what we are facing as a country, this is the time we must once again share our stories. We must demand that Congress address the needs of the disability community in legislation to combat COVID-19.

Here is what Congress MUST do to support the disability community:

  • Funding for a Medicaid grant program to support access to home and community-based services (to minimize the risk of people with disabilities being forced into institutions) and to support the DSP workforce. Congress should pass the Coronavirus Relief for Seniors and People with Disabilities Act.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. Direct support professionals must be designated as essential workforce so that they have access to the PPE and medical supplies they need.
  • Paid leave for caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
  • Help for people on Supplemental Security Income (SSI) to access Recovery Rebates. People with disabilities on SSI are being asked to file needless paperwork in order to access economic stimulus payments. Congress should tell Federal agencies to use their existing authority to share data and file for people on SSI.

The asks of the disability community around this crisis are simple: recognize that whether it is individuals with disabilities, their family members, or the DSP workforce, #WeAreEssential.

Ready to act with us? Here are three easy ways:

Call CongressEmail Congress Tweet Congress
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My Brother, My Role Model

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By Jui Agrawal, Guest Blogger

I am the lucky younger sister of Chinmay Khaladkar. When I think about him, I smile because of all the happy memories that he brings to mind. Whether it is his love for music, cars, travel, or eggplant parmesan, he enriches my life beyond words. Having been born with Cerebral Palsy, and the complications that have accompanied his condition, he has unyielding optimism that makes me proud to be his sister.

My family has been lucky enough to travel extensively, expand our worldview and experience the cultures of many countries. However, the one journey that helped me grow the most has been at home, as I’ve watched my role model, my brother, grow and become the most loving and happiest of people.

Through Chinmay’s eyes you see a world where everyone is good and intentions are always pure. He has a way of talking to strangers, laughing at your most lame joke, and making long-lasting friendships. His celebrations always bring together his biggest fans, whether it’s his therapist of 30 years, friends from kindergarten, or family from across the country- a reminder of all the people he has touched with his love.

Over the years, as our family has celebrated Diwali, the Hindu new year, there is a ceremony when the brother gives the sister a gift as a token of appreciation. Chinmay, not having the ability to drive on his own and get me a present, has repeatedly put his paycheck in an envelope addressed to me in his scrawling letters- flooring me his gesture, and showing me the true meaning of selflessness.

Starting at a young age Chinmay has always been the one looking out for me. Whether it was holding my scared small hand as we went into the darkened basement for a game of hide and seek, or coming to my defense when my parents were angry at me for missing curfew, he has always consoled and protected me, being a true protective older brother.

Despite our connection, we’ve shared the same problems that all siblings face- the squabbles, the jealousies and the competitions. Chinmay will never graduate from college or drive a car, and as I’ve hit these milestones throughout the years, he has had a hard time dealing with my moving on from our days of playing pretend. Though I have spread my proverbial wings, he feels as though I have left him behind in my journey- Chinmay, an eternal child at heart, will never fully understand that it is because of his love and support that I have learned to fly. For both of us.

As we journey through adulthood, I have become increasingly inspired by Chinmay and realized that I want to dedicate my career to the advocacy of people with intellectual and developmental disabilities. I know that without him, I would not see this extraordinary community as having the humility, grace, and determination that they embody.

Jui Agrawal is pursuing a Master in Public Policy degree at the Bloustein School for Planning and Public Policy at Rutgers University. She currently works at the John J. Heldrich Center for Workforce Development on campus assisting with research related to disability employment. Jui has spent time working in Washington, DC, both at the Pew Charitable Trusts and a boutique government relations firm focusing on environmental, tax, and health policy issues. Most recently, she has interned with The Arc of California and United Cerebral Policy, and will be joining The Arc’s national office in Washington, DC this summer 2013 Paul Marchand intern.

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My Definition of Autism

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April is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Amy Goodman is co-director of Autism NOW and an individual on the spectrum. Below is her personal definition of autism. Follow the conversation this month online using #autismaware.

Being an individual on the autism spectrum means that I have a diagnosis of autism. So what? It doesn’t matter in the long run because it does not define who I am or what I can or cannot do. First and foremost, I am Amy, an individual who happens to have a diagnosis of autism. I don’t let it get in my way of anything. It does not present any challenges for me and if it does, I work to overcome those challenges by finding a way to jump through the hurdle and succeed at everything I do or try.

For me, it has been a positive experience finding out that I was on the spectrum. I have embraced it and used it to my advantage. It opened a lot of doors that otherwise would have stayed closed. I was able to move forward with my life when I found out. I went to Graduate school and chose the path that was best for me. It helped me to focus on what I wanted to do with my life.

Knowing I was on the spectrum, and knowing that I could be a success has helped me to jump the biggest hurdle of all, obtaining and keeping a job in the autism field. The opportunities have been endless and by embracing my autism, I have grown as an adult. I finally found what I had been looking for more than 30 years – an answer to what direction I should go, and where I fit in in this world.

Explaining to someone not on the spectrum is very difficult. They just don’t seem to understand why I do what I do. They are always being pessimistic and saying that there is nothing wrong with me, which in this case is true. There is nothing wrong with me. It’s the attitude of others that only see the glass as half empty and that I’m not capable of doing anything at all. That is something that needs to be fixed. Me? I’m the optimist. Don’t fix what isn’t broken. Fine tune it. If someone is on the spectrum, utilize their abilities and accommodate their needs, don’t question them. Work with them to maximize their brain capacity. See the situation through their eyes. Give them a chance to excel and most of all treat them with respect and dignity.

We may not be the most social of beings, but we certainly can learn and grow from our mistakes. Just remember there is more than one way to skin a cat, so explaining what it’s like living with autism is different for everyone on the spectrum. I don’t need to explain anything because I’m perfect the way I am. If I don’t like something I avoid it. If it hurts my ears, I wear earplugs or noise canceling headphones. There is a solution for every problem, one just has to do what is best for them and not worry about what others think.

Autism is part of me, so it should not define me or need explaining at all. Not everyone can pass as “normal” or “neurotypical” but who wants to be like them anyway? I am who I am and there is no changing me. Accept me for who I am and you will see autism in a whole new light.