A close up of a speaker at a podium.

The Impact of Student Loan Debt Forgiveness for the Disability Community

/in , /by Pam Katz

My name is Nicole LeBlanc.

I live in Silver Spring, Maryland. I am on the autism spectrum and have anxiety, ADD, seizures, and a learning disability. I am writing to talk about the importance of helping people with disabilities get their student loans discharged, including ending the 3 year monitoring period. As the Biden Administration works to address student loan debt for people with disabilities, it is critically important that the application process be easier and we eliminate the 3 year monitoring period for work earnings. Student loans create a major financial hardship on people like me and many others with disabilities, especially those who live on their own in expensive areas. The amount of loans that I had discharged was around $1,177 which is just slightly less than what I pay in monthly rent for my studio apartment. No one with a disability should have to choose between paying for rent or basic needs and student loans. Many of us in the disability community struggle with finding jobs that pay livable wages where we make enough to live comfortably off public benefits. Benefit cliffs often force us to make big trade-offs between working and needing to stay eligible for public benefits. Some people with disabilities have their Social Security benefits cut to pay their student loans and that isn’t fair.

The application process for student loan discharge needs to be easier and more accessible to fill out, especially for someone with autism or other disabilities who does not get any HCBS services to help complete complex paperwork and navigate government bureaucracy. All government applications should allow us to submit info online without incurring the cost and hassle of printing and mailing stuff. I am glad the Biden Administration started to do that for some people with disabilities, but all people with eligible disabilities should be included.

By letting people with disabilities discharge loans and eliminating the 3-year income monitoring period, it will go a long way towards eliminating the stress and anxiety that comes with the financial challenges of living with a disability. There is no better time like the present to embrace a commitment to creating a stress and anxiety-free world for people with disabilities and their families. Making these changes is one of the best ways the Biden Administration can fulfill President Biden’s campaign promises to the disability community.

The United States Capitol Building

During Congressional Recess, We Must Raise Our Voices for Care!

/in , , , /by Pam Katz

By: Nicole Jorwic, Senior Director of Public Policy

After a slight delay, both Senators and Representatives are back in their states and districts for August recess, but in fact, it goes until mid-September. That means it is a key time to engage, reach out, and share your stories about why Medicaid home and community-based services (HCBS) matter in the lives of people with disabilities, their families, direct care workers, and the care infrastructure.

Every year, The Arc sends out t-shirts and signs to support advocates and encourage them to get out and ask their members of Congress to support the legislative priorities of people with disabilities. Those boxes were sent out to chapters this year, but with the ongoing pandemic, it is clear that in-person events may not be the best option. Moreover, we know that accessibility issues at town halls, even virtual ones, are a constant barrier to access.

While The Arc staff continues the work to increase access to the political process for all people with disabilities, an alternative way for ALL people with disabilities to participate fully in recess, and have their stories known had to be created.

That is why today, The Arc is launching the “Raise Our Voices for Care” campaign. Even if you can’t get to DC, your state capital, or a local town hall, your story still matters and must be shared. Our story tool is easy to use. At the end of recess, we will put all of those stories together to show the strength of all the voices rising up to support the $400 billion investment in Medicaid Home and Community-Based Services.

As a sister to my brother Chris, who doesn’t use his voice to speak, I know how incredibly important it is that we ensure that every person has the ability to communicate, and that includes with their legislators. Join us, share your HCBS story, and help us Raise Our Voices for Care because #CareCantWait!

SHARE YOUR STORY NOW

 

The Arc logo

The Arc Celebrates Senate Passage of the $3.5 Trillion Budget Resolution to Invest in Crumbling Care Infrastructure

/in , , , , /by The Arc

Washington, D.C. – The Arc is encouraged that the U.S. Senate took an important step in favor of respecting the human dignity of people with disabilities and aging adults. Wednesday, the Senate passed a $3.5 trillion budget resolution triggering the start of the reconciliation process.

The vote paves the way for Congress to pass a comprehensive spending package that would provide generational investments in our nation’s crumbling care infrastructure and groundbreaking benefits that could reshape the future for millions of people with intellectual and developmental disabilities, American families and their children.

“The historic investment in Medicaid Home and Community-Based Services (HCBS) included in the budget resolution will be transformative for a system that currently leaves almost one million people waiting for services all over this country,” said Peter Berns, Chief Executive Officer of The Arc of the United States. “People with disabilities and aging adults, have struggled, well before the pandemic, with a system that does not include the resources to support them in their homes and communities. The infrastructure of care for these groups currently includes the labor of unpaid family caregivers who fill in the gaps in the service system, and a paid workforce that is not paid a family sustaining wage. The $400 billion included to both expand access to HCBS and raise wages for the direct care workforce will shore up the care infrastructure so that people with disabilities can live independently, aging adults can age in place, and family caregivers can return to the workforce.”

The Arc also strongly supports the inclusion of a national paid leave program and hope to see other priorities such as long-overdue improvements to the Supplemental Security Income program included in the final package.

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

Stuck in Time: SSI Desperately Needs Updating

/in , , , /by The Arc

By: Bethany Lilly

My parents celebrated their golden wedding anniversary last year. Fifty years is a long time, and so much has changed—the internet, cell phones, self-driving cars, and we’ve seen so many disability rights victories. Next year, the Supplemental Security Income (SSI) program will also turn 50. But this milestone for SSI is almost disappointing because in those 50 years, the rules of SSI have barely changed. Passed in 1972, SSI was designed to keep the lowest income adults and children with disabilities and older adults from living in poverty. But Congress has ignored this crucial lifeline and failed to update it, instead leaving people with disabilities and older adults trapped in deep poverty, for fear of going over the limits and losing benefits. Rules that haven’t been updated in a half century govern how much money people who rely on SSI can earn, how married couples who receive the benefit are treated by the federal government, the amount of income the program provides, and how much help family and friends are allowed to give to loved ones on SSI. Rules about how much people can save haven’t been updated for almost 40 years!

SSI is supposed to fill in the gaps of other government support programs, paying for housing and other expenses that aren’t covered by Medicaid. But the current rules make that almost impossible. If someone is relying on SSI, the cost of renting a one-bedroom apartment almost anywhere in this country will consume more than the maximum monthly SSI payment of $794, leaving practically nothing for other expenses like groceries and other necessities. And limiting savings to only $2,000 means that many people cannot save enough to even move into an apartment or house. People can end up trapped in institutional settings, with no ability to afford an alternative. Like so many other parts of the disability service system, SSI is crucial infrastructure that is crumbling due to decades of neglect.

Nothing has made that clearer than the pandemic. With a maximum monthly SSI benefit of $794, people with disabilities are struggling to afford the necessities of pandemic life like masks, grocery delivery, and increased prices for so many basic goods. Restricted from saving more than $2,000, no SSI recipient could rely on their savings to get them through the past 17 months and the uncertainty that is ahead during this ongoing pandemic. Accepting help from family, friends, or mutual aid means a benefit cut. And because of marriage penalties, couples face an even harsher financial reality. Even the government’s COVID relief efforts created problems–stimulus checks and unemployment insurance expansions created eligibility issues because the systems used to implement these rules are equally archaic, unable to adjust to new benefits. For the millions of people with disabilities who are eligible for Medicaid because they are eligible for SSI, this was not only an issue with income security, but also put their access to health care and home and community-based services (HCBS) at risk.

Just as the pandemic highlights the need to expand HCBS and finally address the workforce crisis for direct care workers, it also shows us that the program that is supposed to pay for everything else is trapping people with disabilities in poverty. Enough is enough. We must fix these archaic SSI rules.

President Biden acknowledge the need for change during the presidential campaign, calling for five major reforms to the SSI system:

1) increasing benefits to at least the federal poverty line

2) increasing income limits to encourage work

3) eliminating harmful rules penalizing help from family and friends

4) eliminating marriage penalties

5) increasing asset limits

Any one of these changes would dramatically improve the lives of the 8 million people who rely on SSI, including almost 1 million children with disabilities. It would help ensure that people with disabilities can live with their families and friends in their own communities, with the supports they need.

We have a rare opportunity – right now – to fix the crumbling disability service system by fixing SSI, expanding HCBS, and passing a national paid leave program. We must act on this opportunity!

#CareCantWait

50 years is a long time. Just ask my parents.

A woman sits in a motorized wheelchair with the US Capitol building in the background. She is smiling and wearing glasses, colorful floral pants, and an orange shirt with The Arc's logo that reads "Disability Rights are Human Rights"

The ADA Turns 31

/in , , /by Pam Katz

Today, we mark 31 years since the passage of the Americans with Disabilities Act (ADA). The Arc is proud of our long history advocating with and for people with intellectual and developmental disabilities (IDD) and working to ensure that their most fundamental rights and the protections guaranteed by the ADA are recognized and fulfilled.

Thelma Green, 61, is a self-advocate in Washington, D.C. who The Arc profiled in a story in 2017 about the importance of Medicaid in her life. On this anniversary of the ADA, Thelma, a wheelchair user, shared reflections on what the landmark law means to her. She was a young woman when the ADA passed in 1990.

“The biggest change is that I got more than once choice for transportation and being able to get around and have stuff more accessible,” she said.

Thelma says before the ADA was passed into law, navigating the community was tough.

“Back then, they didn’t have accessible cabs or Metro Access. It was really difficult,” Thelma tells The Arc.

And she says daily living was more challenging and people treated her with less respect.

“I think it was more difficult before because people weren’t really listening to us. They weren’t taking people with disabilities seriously enough until a family member stepped in,” she explained.

The ADA transformed the country in important ways, changing expectations for the lives of people with disabilities. The law requires accessibility and bans discrimination in almost all private businesses, and has significantly reduced discrimination in state and local government services. The transportation and paratransit provisions have yielded greater mobility and community participation. Employment provisions have been important, for example, providing protections in the hiring process and expanding the use of job accommodations for workers with disabilities. The built environment has tangibly changed based on the requirements of the ADA, for example, ramped building entrances and curb cuts on sidewalks are now common. In major ways, people with disabilities are closer to the goals of equality of opportunity, full participation, independent living, and economic self-sufficiency defined in the law.

But Thelma knows the fight for equity is far from over, and The Arc and our allies are advocating for stronger enforcement of this civil rights law.

“You have to continue on fighting for the same rights that everybody else has. We need to have more accessible places for people with wheelchairs and crutches to make it much easier for them to get it and more accessible buildings,” she said.

On this anniversary, Thelma also wants people to recognize and be sensitive to people who have hidden disabilities that are not always obvious. Across the United States, more than 6 million people have hidden, or invisible disabilities, like autism, sensory disorders, or dyslexia. And, they also entitled to the protection of the ADA.

As we renew our commitment to the ADA, and the charge to eliminate unjustified segregation and exclusion of people with disabilities from American life, The Arc reaffirms our goal to protect against forms of discrimination based on disability, race, sex, gender identity and expression, sexual orientation, national origin, or any other protected status. We will keep fighting to defend the rights and lives of Thelma and all people with disabilities and their families, and advance toward full inclusion for all.

The Arc logo

The Arc Denounces Ruling on Use of Shock on Residents With Disabilities at Judge Rotenberg Educational Center

/in /by Pam Katz

In a stunning reversal, the U.S. Court of Appeals for the D.C. Circuit overturned the Food and Drug Administration’s ban on the use of electric shock devices that has inflicted painful abuse on residents of the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts for decades. JRC is an institution for children and adults with intellectual and developmental disabilities and mental health issues. The Arc and The Arc of Massachusetts, alongside several disability rights organizations and empowered self-advocates across the country, fought for decades to stop this practice.

By the FDA’s own count, as many as 50 JRC residents wear the shock device. Staff members use remote controls to administer shocks for perceived misbehavior. JRC is the only place in the country that uses the barbaric and inhumane practice, despite substantial evidence that the shocks are painful and traumatizing to residents, and alternative positive behavioral supports exist, and are proven more effective.

“In 2021, we should not still have to fight tooth and nail for people with disabilities to live free from fear and torture. The Arc denounces this ruling, as it strips dignity away from those living at this facility and threatens the civil rights of all people with disabilities. We will continue to fight for the end of this abusive practice,” said Peter Berns, CEO, The Arc.

A mother, father, and two adult sons stand smiling with their arms around each other. They are indoors and have nametags and business clothes on.

The Social Security Law That Keeps Parents Awake at Night

/in , , /by Pam Katz

By Micki, Grassroots Advocate

My husband and I consider ourselves to be informed parents. When our twin sons Zach and KC were diagnosed with intellectual disability in infancy, we tried to learn all we could to be a good mom and dad. We attended educational programs, joined local organizations that focused on families like ours, and did what we thought was best for our sons.

When they reached the age of 18, we were advised to apply for Supplemental Security Income, a federal income program for those 18 and older who are blind, have a disability, or are aged and have very little income. That went without a hitch. A few years later, one of our sons received a letter from Social Security stating that because he had worked for several years in the community, his benefits would switch from SSI to SSDI, Social Security Disability Insurance, a program for those with disabilities who are part-time workers. He qualified because after graduating from high school, he started working as a front-end clerk/bagger at a supermarket. It has always been and because of our son’s disability, will always have to be, part-time work. He has continued to work in this position for 21 years. He is very proud of this achievement. Again, the switch from SSI to SSDI went without us having to complete any paperwork.

During the first few years that he worked, we were still figuring out how much work he could do. On occasion, the store manager wanted him to put in extra hours because another employee called in sick or didn’t show up to work. It was difficult for him to say no, even if he couldn’t really manage the work. We received a few letters from Social Security stating that he earned too much money when that happened. We spoke to someone from Social Security, but nothing was said about him losing out on higher benefits when his parents retired or passed away. Nor was anything explained to us about how much he could earn while still maintaining benefits. Since he continued to receive payments, we assumed the past problems were just that: in the past.

Foolish assumption.

Some 15 years later, in 2016, when my husband turned 66 and applied for Social Security, he requested that Zach and KC receive SSDI benefits as Disabled Adult Children (DAC) under his work record. DAC benefits would be far more generous than our sons’ own benefits because my husband worked for many more years and also earned more.  My husband and I were counting on these benefits to help our sons with their living expenses when we were no longer able to provide financial support. My husband was told that our son who was the front-end clerk would never be able to receive DAC benefits because he earned too much money a few times, occurrences that took place 14 and 15 years ago. Social Security sent us a document showing when his income was too high—it was seven times total, and each time was under $40.

What should we do? Everyone we spoke with was stumped, including attorneys who specialize in denied Social Security Disability applications. With much persistence, we eventually found someone who explained that the things our son had paid for to help him work, like the medication he took to help him focus or the costs of his job coach, could be used to offset the income that exceeded Social Security’s requirements. We learned these are called Impairment Work Related Expenses, IRWEs.

Even though we’d been told that throwing away backup documents from tax filings after seven years was safe, we never did. Luckily, we had the receipts showing those costs which filled a box large enough for a 10-ream case of paper. We took it to the local Social Security office and requested that they review the materials and reconsider our son’s denial of DAC. The Social Security employee was taken aback by the number of documents in the box. He said he wasn’t allowed to work overtime and had no idea how long it would take him to go through it all!

After several nerve-wracking months, we heard from Social Security. They reversed their decision. Our son was approved as a DAC!

There are many families like ours who had and/or continue to experience a similar nightmare. Many of our loved ones work part-time in jobs with fluctuating hours which results in income varying from one month to another. Countless families don’t know about IRWEs or understand the complex rules of Social Security. We are all understandably terrified of doing anything that might put our children’s future benefits in jeopardy. Some find it easier to have their family member not work at all, thereby isolating them from the community and depriving them of self-worth.

The current law is a huge disincentive to work and it’s just too complicated.

Our son is now living by himself in the community. Being self-sufficient means the world to him. His DAC benefits along with his limited earnings cover his expenses, such as rent, utilities, groceries, etc. Without the SSDI DAC benefits, he would no longer be able to live independently in the community.

Parents of adults with intellectual disabilities want the assurance that their loved ones will continue to have meaningful lives after they’re gone. Knowing that their adult children can work and maintain DAC benefits is one critical way of guaranteeing that—the law needs to change.

 

Find out how you can help Micki’s family and others in the same position.

Learn more and act now!

 

The United States Capitol Building

Better Care Better Jobs Act Will Make Huge Investment in Disability Services

/in , , , , , /by Pam Katz

The system that provides supports and services for people with intellectual and developmental disabilities (IDD) and their families has fallen far short of their needs for decades, and the COVID-19 pandemic exposed and worsened this reality.

The Better Care Better Jobs Act (BCBJA) introduced today will make a huge investment necessary to change disability services into the future. This bill puts into motion the proposals that were included in President Biden’s American Jobs Plan, which prioritizes the crumbling care infrastructure in this country and recognizes the importance of fixing it and building back for the future.

“Every day, people with disabilities are waiting for their lives to start and often going without the supports they need to achieve their goals. Families that want a different life than an institution or nursing home are forced to navigate a patchwork system of supports with waits and no guarantees. Family members are often forced to either quit or limit their job choices to provide care due to lack of services. And the direct care workforce is underpaid and undervalued.

“We are desperately overdue for a huge investment in disability services. The Better Care Better Jobs Act introduced today will be a game-changer and must be enacted quickly for the disability community to be a part of our economic recovery from this disastrous pandemic,” said Peter Berns, CEO, The Arc.

When the BCBJA becomes law, it will provide huge funding enhancements to states which focus on improving and expanding their Medicaid home and community-based services (HCBS) delivery system. The bill would provide funding to expand access to services for people who are currently on waiting lists for these vital services, and create more and better direct care jobs for the paid workforce that provides these services.

Learn more about how HCBS are vitally important to the lives of people with IDD and their families.

A man and his son each kneel beside an air traffic controller, mimicking his outstretched hand signal. Behind them is the wing of a plane and a city skyline.

A Father’s Love: The Rewards of Disability

/in , /by Pam Katz

A father and adult son stand together, smiling, in front of a black train with green hills and mountains in the background. To the left of the train is a yellow building. Jose Velasco is thankful for the incredible journey of fatherhood. The father of two did not foresee the life he and his wife, Deya, and their son and daughter created, together. This Father’s Day, Jose reflects on nearly three decades of being a dad and how disability has rewarded his life in ways he had not imagined when the family began their autism journey. Each day of that journey, Jose has only wanted one thing.

“The single biggest thing we want is for our kids to be happy,” he said. “Seeing the resilience my son has demonstrated has been absolutely phenomenal. I’ve learned so much about kindness.”

Jose’s 27-year-old son is named in his father’s honor. Jose, Jr. is on the autism spectrum, a diagnosis that has presented challenges along the way, while instilling determination and a growing realization that disability does not minimize ability.

When asked to describe his best memories with his father, it is clear there are just too many. Jose, Sr. has always been there for his son.

“Where to begin … I think it goes all the way since I was born,” Jose, Jr. told The Arc. “He is the equivalent of my best life-long friend. We have done great things together, from flying on a biplane, to riding numerous trains (steam, diesel, old and new) to high-adventures in the Rocky Mountains, like hiking and white water rafting. Spending a lot of time together has been one of my favorites things, including various journeys around the U.S. and Mexico.”

Jose, Sr. is a member of The Arc of the United States Board of Directors. He is program director in the Business Process Intelligence organization of global software company SAP. He is also ambassador of the company’s Autism at Work program, which has provided more than 600 employment opportunities for people on the spectrum. But Jose is most proud of his title as dad.

“Seeing Jose, Jr. succeed, happy, and how he has inspired people,” he said describing the greatest rewards of being Jose’s father.

This spring, Jose, Jr. accomplished a major achievement. After several years of setting goals, persisting, and working hard, he graduated from Austin Community College earning an Associate of Applied Science degree in Computer Information Technology – Computer Programming – Software Testing Specialization.

“He worked so hard for that. He worked really, really hard,” said Jose, Sr. “It was a reward for my wife and me, but for him as well.”

“The equivalent of winning a race. It was two-year degree, it took me close to 7 years and it felt great to have finished something I started,” Jose, Jr. said with pride.

Jose, Sr. is a disability rights advocate not only for his son, but – for all. He joins The Arc and other advocates who are urgently calling on Congress to act to fund $400 billion for the Medicaid home and community-based service (HCBS) system, increase wages for the direct care workforce, and create more of these jobs.

For years, the service system that people with intellectual and developments disabilities and their families rely on, Medicaid, has needed an update. People are stuck on waiting lists, the direct care workforce is underpaid, and too often, unpaid family caregivers are filling in the gaps in service. The COVID-19 pandemic has magnified these problems and exposed the cracks and gaps in the care infrastructure when it comes to supporting people with disabilities.

Jose, Sr. is hopeful this investment by Congress would help secure a life of opportunity and independence for his son in the future and the disability community as a whole.

“There are very high hopes from our IDD community for the HCBS investment to take place. Expanding access to services, the creation of direct care jobs, and an increase in wages are cornerstone elements of a sustainable platform to deliver quality services that so many people need.”

Being a father to a child with a disability has taught Jose many life lessons.

In high school, Jose, Jr. went out for the wrestling team. He fell in love with the sport but the skills didn’t come naturally. After several early elimination losses, Jose, Sr. and his wife felt heartbroken for their son and lovingly suggested that he help support the team as a student assistant. But, Jose, Jr. – determined – taught his parents a valuable lesson.

“He said ‘you guys don’t get it. I want to be a wrestler,’” Jose, Sr. explained.

Jose, Jr. started training and working out and it paid off.

“He won. The gym went crazy. It was the beginning for him of something special,” Jose, Sr. shared holding back tears.

It was in that moment Jose, Jr. decided he wanted to go to college.

Today, Jose, Jr. works for the Internal Revenue Service. He started a new position earlier this year and has risen to the challenges of the new role.

This Father’s Day, Jose, Jr. has this message for his dad:

“This is what I would put in a card for Father’s Day: Dad, all I want to say is thank you. Thank you for being my father, for raising me, teaching me, and protecting me.”

Like father, like son. Jose, Sr. is also thankful. The rewards of disability and fatherhood are immeasurable.

Three people, two standing and one seated with a blanket over them. The two women standing in the back have face masks on.

One Family’s Story of Moving From an Institution to the Community

/in , , /by Pam Katz

We Were Afraid of Change, But The Arc Was There

When Amy was born in 1967, her family was told that she needed to live in an institution to get the medical care and services she needed due to her inability to speak and move independently. Her family followed doctor’s orders and placed in her an institution in California, where the family lived at the time. All her sister, Laurie, recalls of the institution is her sister’s tears. She cried every time the family left from a visit.

Amy lived in institutions for many years—but she and her family never could have imagined what waited for them on the other end of her time there.

 

Life at the Northern Virginia Training Center

The family moved to Virginia in 1975. Amy and Laurie’s parents found eight-year-old Amy a place in the Northern Virginia Training Center—another institution. For many years, the institution was all that Amy, Laurie, and their family ever knew. Amy appeared very happy there. As a child and teenager, Amy attended a day program in the local school system, and there were dentists and doctors on the campus of the institution. Amy and Laurie’s family would even invite staff from the institution to join them for family dinners. As an adult, Amy began to seem a bit sad when she aged out of the services available by the school system. Her post-high school activities included a day program where she crushed cans.

Amy’s family was dedicated to Amy and making sure she could get out and do things she liked. However, the institution did not have the resources to take Amy and the other residents off the institution campus and they did not even have a lift that could help them move Amy around. So, if Amy wanted to go somewhere, her family had to take her. As Laurie and their parents got older, they weren’t as able to do this and it really limited Amy’s ability to get out and go shopping or see movies. Similarly, when Amy would get sick or have surgery, Amy and Laurie’s parents would have to stay with her in the hospital because there was not enough staff from the institution to provide care, and the hospital staff were not trained to take care of her properly.

When Virginia decided to close the institution in 2016, Amy and Laurie’s family were one of many who would fight for the institution to remain open—firmly committed to the center that had served their family for so many years. This at times put Amy and Laurie’s family and other supporters of the institution in direct conflict with The Arc and its local chapters, which were powerful advocates to expand community-living supports and end the use of institutions.

However, Amy and Laurie’s family could read the writing on the wall and began talking with The Arc about what life could look like next for Amy.

 

The Arc: New Freedom

Four people in a selfie. Three are in the background of the photo wearing black masks and shields, and one person is in the front, smiling without a mask. They have short brown hair.

Laurie was working for an elected official in Virginia and knew the leadership at her local chapter of The Arc.

While they had different opinions, The Arc of Greater Prince William County’s leader, Karen Smith, was very respectful to Amy and Laurie’s family. Karen learned about Amy’s unique needs and preferences and helped build a group home setting that would work for her. Through it all, The Arc never gave up on Amy and Laurie’s family and made sure to reassure them that Amy would get the help she needed in the community.

The transition went smoother than the family expected. Amy’s group home was near Laurie and her parents, and the family could visit Amy as much as they wanted.

Most importantly, there were huge and wonderful changes for Amy.

Laurie and her parents worried at first about Amy having her own room. In the institution, Amy shared a room with the same roommate for nearly 30 years. They thought she would be scared and would want them to stay overnight with her. Laurie had even packed an overnight bag just in case Amy needed her. However, Amy loved having her own space—and decorating her own room. According to Laurie, “she has more new comforters than I have ever had in a lifetime.” Amy also enjoys the atmosphere of the home. She is treated as an individual, lives in a beautiful neighborhood with a garden out front to explore, and sits on the screened porch to enjoy the view of the woods behind her home.

Amy is also able to go out on her own and do things she wants to with Laurie or the group home staff. Amy, a housemate, and her staff go to shows together and her group home staff take her out to shop at the mall and go to the movies regularly. Amy also attends a day program for adults in the community that she is always very excited for. The day program is also only a mile from Laurie’s home and Laurie is welcome to visit her sister at any time. According to Laurie, “it is really nice to be able to pop in and say ‘hey, how’s it going’ and hang out with her.”

In this past year, due to the COVID-19 pandemic, life has changed again for Amy and Laurie. However, even in a terrifying pandemic, the group home staff have still helped Amy do things that matter to her. Though she has not been able to get out as much, Amy has been using her iPad and phone extensively. Laurie regularly gets videos of Amy where she makes faces and expresses to Laurie how she is really feeling. Laurie can send gifts to Amy to keep her cheerful and in early April 2021, Laurie and Amy were finally able to reconnect in person. They are hoping to take a shopping trip soon!

 

Advice for Others on Embracing Change and the Possibilities it Brings

We asked Laurie what she would want to tell others about her family’s experience over the years. She said that “there is always a fear of change,”— but in that change is a possibility for growth you may not have imagined before.

“I can’t emphasize enough how much The Arc of Greater Prince William County was there to make sure that people are happy. They go out of their way to make sure that people get what they need, like getting a much-needed haircut in the pandemic. The people there put a real personal stamp on everything they do. I just want to make sure that they get all the credit the deserve—especially the group home manager, who is wonderful.”

 

How You Can Help

There are still institutions open today in 36 states across the United States. For many, the institution is all they know– and they and their families may fear what change means for them.

There may be fear from past failed attempts at community living or concerns that people with more support needs can’t be safe and healthy in the community. But that fear can be overcome with the right level of supports and a caring community-based disability service provider, like The Arc of Greater Prince William County and The Arc’s chapter network.

What we know is that most people with disabilities and their families do want access to a life in the community, no matter the level of supports necessary to make that happen. But when they try to find what they need, too often the system fails them and makes them wait for services. This must change.

 

Join us to help make sure that everyone can get the support that they need in their community!

Visit thearc.org/MedicaidCantWait to learn more and see how to advocate with us.