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Spotlight on Self-Advocacy at The Arc of Sedgwick County

The Arc of Sedgwick County in Kansas has something many chapters do: a self-advocacy program. And their program is wildly successful, in part because of its focus on volunteerism. Members don’t just learn how to advocate for themselves effectively—they take an active role in constantly giving back to their community. As a result, they have built lasting relationships and helped the programming of the entire chapter grow stronger. Read more from their Executive Director Kevin Fish about how Sedgwick’s “Shooting Stars” are changing their community for the better.

Tell us about the self-advocacy programs you run at The Arc of Sedgwick County.

The “Shooting Stars” self-advocates started as the Young Employable Adults (YEAs) back in 1972.  The focus was to help them develop self-confidence and independence and reach their fullest potential.  Early efforts were to encourage and promote community employment. Over time it was expanded as we explored what it meant to advocate for yourself.

A large group of people sits and stands posing for a photo.

The “Shooting Stars” focus heavily on volunteerism and giving back to the community. What types of activities do they do and what are some of the positive results you’ve seen of this approach?

Our self-advocates will help with our Youth Activity Days for our Circle of Friends program. They run games and other activities and help prepare lunch for 1100 students attending our annual wildlife park day. 

They sponsor and run a free Halloween trick or treat event for neighborhood kids. They sponsor photos with Santa and help with preparations for The Arc’s Lights drive-through Christmas display. They host and help run an Easter egg hunt for children with I/DD and their siblings. They assist with almost every special event The Arc does each year.

The community’s appreciation for the work they do helps them gain confidence and feel connected. They enjoy the happiness they give others and how kids look up to them. Many self-advocates have gone to advocate at the state capitol and presented to the City Council and the County Commission. Members have served on The Arc’s board, presented monthly reports to the Board, and served on various committees, boosting their pride in themselves.

What is the involvement level of your staff in supporting the efforts of your self-advocates? How does the group decide what types of activities they do and how they structure their events?

Our staff help lead monthly discussion forums and help organize monthly potlucks and quarterly appreciation events for our self-advocates. During our forums and potlucks, we will discuss upcoming events and activities and what they want to do. Many of the activities have become a tradition! They are invested and feel a sense of ownership and pride in what they are doing. For the forums, staff will also prepare some interactive educational components on topics like finance, work expectations, relationships, and daily living.

It’s hard not to mention the current health crisis affecting us all and the importance that supporting each other has taken on in the last few weeks. Does the group have any plans to volunteer in your community the coming days, and if so, what? Has the self-advocacy programmatic structure you’ve set up helped provide any stability, socially or otherwise?

For a group that is so active, not only with The Arc, but within our community, the current pandemic has made life a challenge. Most all of them are no longer working with the state-wide stay at home order.  Most every event and activity at The Arc has been cancelled or postponed for the next month.  Many of the entertainment facilities and churches are all closed, eliminating places they like to go or volunteer after work. This change in routine is difficult. What they see and hear is creating anxiety in many. The isolation is creating loneliness. Within our self-advocate group, we have been trying to encourage them to call a friend, send a note an email, or reach out through social media. Especially for those who live alone, we want to make sure people are connecting regularly. 

What should other chapters know who are interested in starting and growing a self-determined self-advocacy program?

Helping your self-advocates find their voice, take charge of their lives, and advocate for themselves and those around them is part of our mission. A passionate and active self-advocate group can make a big difference in not only your organization, but also your community and state. The development of our self-advocate group to help them reach their fullest potential truly became a way for our chapter to work towards reaching its fullest potential. Countless programs and events were created or evolved based on what our self-advocates wanted, needed, or wished they had. They provide more than manpower. They are invested, passionate, and inspired and help us continue to feel the same way too.

Black and white photo of people holding signs that say "I Count. Count me in. Census 2020"
A woman in a scooter and a dog play on a grassy field in front of houses.

The Arc and Partners File Amicus Brief Challenging Discriminatory Actions of Dallas Housing Authority

This week, The Arc and other national and local disability and civil rights advocacy groups—represented by the law firm WilmerHale—filed an amicus brief before the U.S. Court of Appeals for the Fifth Circuit in the case Community for Permanent Supported Housing et al v. Housing Authority of the City of Dallas. The brief provides background on the affordable housing crisis facing people with disabilities and explains that the promise of the Americans with Disabilities Act’s (ADA) “integration mandate” cannot be fully realized without affordable, independent housing opportunities in the community. The brief was joined by the American Civil Liberties Union, the American Civil Liberties Union of Texas, The Arc of Texas, Disability Rights Advocates, the Judge David L. Bazelon Center for Mental Health Law, and the National Disability Rights Network.

The case, filed in federal district court in the Northern District of Texas in 2018, challenges the Housing Authority of the City of Dallas’s (DHA) refusal to use the U.S. Department of Housing and Urban Development’s (HUD) Project-Based Voucher (PBV) rent subsidy program to provide otherwise scarce affordable, independent housing opportunities for people with intellectual and developmental disabilities (I/DD) in the community. DHA was poised to offer such PBVs—each of which would permit a single-family house to be rented at subsidized rates to several people with I/DD who can live independently with appropriate supports—but then canceled its offering and has refused to offer any substitute, without any good reason. The lawsuit alleges that DHA’s actions violate the ADA, Section 504 of the Rehabilitation Act, the Fair Housing Act, and state law. The district court dismissed the case in April 2019 and Plaintiffs appealed to the Fifth Circuit. Plaintiffs are represented by Relman, Dane & Colfax PLLC, a Washington, D.C. based civil rights law firm, and Disability Rights Texas, a statewide protection and advocacy organization. The amicus brief supports Plaintiffs’ request to reverse the district court’s dismissal order and let the case move forward.

As the brief explains, in 1999, the U.S. Supreme Court held in Olmstead v. L.C. that “unjustified institutional isolation of persons with disabilities is a form of discrimination” under the ADA and, as such, the ADA requires public entities to administer programs “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” But this integration mandate cannot be fully realized without affordable housing opportunities in the community that enable people with I/DD to live outside their family homes. For many adults with I/DD currently living with family, opportunities that allow them to live in the community separate from their families are often preferable because these opportunities provide greater independence and autonomy. Additionally, living in the community separate from their families can be critical for adults with I/DD to avoid homelessness or institutionalization when a supporting family member inevitably ages and reaches a point where she or he can no longer provide shelter or support. Of the more than 100,000 people with I/DD living in North Texas, around 75% live with at least one family member into adulthood because of a shortage of affordable housing that would enable them to access community-based support services in homes apart from their families.

“Defendant DHA has publicly acknowledged that two-thirds of adults with I/DD in North Texas ‘may be at risk of institutionalization or homelessness’ due to a severe affordable housing crisis. These numbers are unacceptably high and represent a crisis that must be urgently addressed,” said Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel for The Arc. “DHA’s actions violate numerous federal and state civil rights laws and harm Plaintiffs by unduly restricting opportunities for community-based housing that offer more independence and autonomy and puts individuals with I/DD in North Texas at risk of homelessness and institutionalization. Plaintiffs should have the opportunity to prove their allegations on an issue as critical as community-based, affordable housing opportunities for people with disabilities.”

“We are proud to represent a number of disability and civil rights advocacy organizations as amici on this important issue,” said Christa Laser, an attorney with the global law firm WilmerHale. “We hope that this amicus brief helps to advance the rights of people with disabilities by ensuring meaningful access to affordable housing opportunities in the community.”

A volunteer in a tie dye shirt holds a paper bag of food donations

Get Into Inclusive Volunteering: Apply for a 2020 MLK Day of Service Grant

Inclusive volunteering is great for people and communities. When people give back together, they build friendships, practice their civic duty, learn skills they can use in the future, and help people in need.

But inclusive volunteering is not just a great idea for people—inclusive volunteering is a win for organizations. By developing inclusive volunteer activities, organizations show their dedication not just to their community, but also to supporting genuine inclusion for all members of their community, regardless of background or ability.This year, The Arc is once again partnering with the Corporation for National and Community Service to offer $5,000 and $10,000 grants to nonprofit community organizations to develop service projects that commemorate Dr. Martin Luther King, Jr. Projects must be designed for people with intellectual and developmental disabilities (I/DD) to volunteer alongside people without disabilities and should focus on providing food assistance to people in need in the community.

Over the past five years, The Arc has helped organizations across the country implement inclusive volunteering projects. They’ve seen firsthand the value of inclusive volunteering for the organization, with activities leading to new community partnerships and increased ability to reach new groups and service areas.

Is your organization ready to join them? Consider applying for a 2020 grant today!

Events must take place on MLK Day of Service in January 2020 and may continue through August 31, 2020.

Grantees will:

  • Partner with a service club to recruit volunteers with and without disabilities from diverse racial and ethnic backgrounds to participate in the project
  • Work with hunger-focused groups (e.g., community food banks, food pantries, soup kitchens) to deliver emergency food aid to people in need
  • Provide food aid on the MLK Day of Service and continue through the end of the grant (May 31, 2020)
  • Raise $31,000 ($10,00 grant) or $15,500 ($5,000 grant) in in-kind or cash matching funds to support the project

The application deadline is October 10 at 11:59 p.m. ET.

Request for Proposal (Word) | Request for Proposal (PDF)

Questions? Contact Jennifer Alexander at alexander@thearc.org.

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Bringing Positivity and Inclusion to the Table: Sodexo’s Disability Hiring Program

Kevin’s Story

Kevin stands smiling in front of a black chalk wall with drawings on it, wearing his employee name tag, an apron, and a hat. Kevin will be the first to tell you that he is a people person — and it is easy to see why. His sense of humor, high energy, and positivity are hard to miss in National Geographic’s Food Court, where he works both in the front and the back of the house to ensure that the center’s employees are well taken care of during their lunch breaks.

“I love my job. I especially like speaking with our customers and making sure that they have what they need to be happy. My job is to make the customers happy and I take pride in that.”

Kevin is one of several employees with disabilities who were hired this year at Sodexo’s site at the National Geographic’s headquarters in downtown Washington, DC through a partnership between Sodexo and The Arc of the United States. Laura Monto, General Manager of Sodexo’s site at National Geographic, was inspired to create the internship program from the personal experience of being an aunt of a young man with autism. “Knowing how sharp, caring and eager to learn my nephew is, I wanted to provide people with disabilities with the opportunity to learn valuable professional skills and be part of an inclusive team of hardworking and dedicated individuals,” said Monto.

The Arc and Sodexo’s Long-Standing Collaboration on Disability-Inclusive Hiring

The Arc and Sodexo started a similar joint-disability hiring initiative in 2017 at a site in Philadelphia. The site’s General Manager, Dolores Abbonizio, has worked for Sodexo for three decades and has more than 20 years of experience in successfully hiring people with disabilities. More than just creating job opportunities for people with disabilities, Abbonizio believes that creating this program has positively impacted the lives of her employees without disabilities, a positive feeling which is also felt by guests and senior leadership alike. Abbonizio said that her site’s success at hiring and retaining employees with disabilities comes from her entire team’s buy-in to creating an inclusive working and learning environment. “There are certain things that need to happen and systems that need to be in place in order to create a disability-inclusive workplace, but it begins with the whole team’s commitment to making sure that all of our employees feel welcome and are set up to succeed,” said Abbonizio.

Managing a disability-inclusive workplace does have some challenges, but Laura Monto points out that these are no different than managing any other sites she has worked at in the past. “Whether an employee has a disability or not, there is always a learning curve and every individual has a unique work style and personality,” said Monto, “The key to creating a truly inclusive environment is to provide the right supports to your employees to create equity, while ensuring that you treat them all equally and with respect,” Similarly, Dolores Abbonizio said that understanding an individual’s skill set and career goals is critically important to setting them up for success in the workplace. “When you’re working with a new hire, regardless of their abilities, it is important to make sure that their skillsets are matched to the tasks and responsibilities given to them so that they can succeed, create positive momentum and grow,” said Abbonizio.

Bringing Disability-Inclusion to Scale at Sodexo

Back at Sodexo in DC, Kevin is now an integral part of Sodexo’s team at National Geographic and continues to improve his performance and gain autonomy. Aside from what he brings to the table professionally; Kevin’s positive attitude and energy is felt throughout his workplace. Kevin’s success at Sodexo is the result of his hard work, but also of the enabling and inclusive environment that Laura Monto and her team have created. The Arc and Sodexo plan to take the lessons learned from its local successes in Washington, DC and Philadelphia and work with other sites in Sodexo’s national network to bring disability-inclusion to scale at Sodexo. “[Hiring people with disabilities] has always been a positive experience,” said Abbonizio.

Kevin poses, smiling, in front of the food counter at work.

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It’s About Community: Celebrating the 20th Anniversary of Olmstead Decision and Advancing the Integration Mandate

The U.S. Supreme Court Olmstead v. L.C. decision 20 years ago established that unjustified isolation is a form of discrimination under the Americans with Disabilities Act (ADA). The decision acknowledged that segregating individuals with disabilities in institutional settings deprives them of the chance to participate in their communities, interact with people who do not have disabilities and make their own day-to-day choices. The Olmstead decision furthered the promise of the ADA, prohibiting unnecessary segregation and expanding integrated services for people with disabilities.

At this important milestone, let’s join together to acknowledge Lois Curtis and Elaine Wilson, two women with diagnoses of mental health conditions and intellectual disabilities, whose determination to return to the community has come to benefit us all. Let’s also celebrate the efforts of people with disabilities and their families and the disability rights community, and the progress we have made together. We must continue to build an array of community-based and integrated options to support choice and independence, and work to end inappropriate and unnecessary institutionalization. Together, we can advance integration, encourage and support full, meaningful inclusion in community life, and economic self-sufficiency.

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Walmart, Disability Employment and an Opportunity to Lead

By Peter Berns, CEO, The Arc

It’s no surprise that when Walmart, our nation’s largest private employer, announced plans to change the People Greeter role in its stores, a move that affects some employees with disabilities serving in that role, there was a hue and cry in the disability community and beyond. It is heartening that Walmart US President & CEO, Greg Foran, immediately stepped forward to reiterate the company’s commitment to its employees with disabilities, stating that Walmart will look at each situation individually “with the goal of offering appropriate accommodations that will enable these associates to continue in other roles with their store.” Foran further explained: “Let me be clear: If any associate in this unique situation wants to continue working at Walmart, we should make every effort to make that happen.”

As a company that prides itself on its “long-standing history of being an employer of choice for people with disabilities,” and on its 100 points score on the Disability Equality Index, these recent events provide an opportunity for Walmart to demonstrate its leadership and commitment to people with disabilities and their families. Certainly, the first order of business is to support employees with disabilities in the People Greeter role who are not able to perform the new additional responsibilities of Customer Host to transition to other jobs in the company and to actively support them in doing so. The Americans with Disabilities Act (ADA) requires no less.

At a point in time where more than 60% of people with disabilities are not employed, including 65-75% of people with intellectual and developmental disabilities, how Walmart manages the current controversy is of vital interest. Walmart’s customers are watching, as are people with disabilities and their families, disability advocacy and services organizations, academics, lawyers, the news media, and many, many other employers. The company has the opportunity to lead our nation by modeling and demonstrating best practices in employment of people with disabilities in the mainstream workforce.

Walmart can demonstrate the importance of rejecting stereotypes and misconceptions about what people with disabilities can do. True, some people with disabilities, as well as some without disabilities, may not be able to perform all of the requirements of the new Customer Host job, such as lifting 25 lbs. Yet, it is also true that many people with disabilities, including those with intellectual and developmental disabilities, will meet and exceed the minimal job requirements and perform superbly in this new role and others within Walmart stores. Walmart and other employers need be open to and accepting of the reality that an employee with a disability, with appropriate training and accommodation, can be successful in a wide variety of roles. In Walmart, after all, the former People Greeter and new Customer Host roles represent only a tiny fraction of the more than 2 million jobs nationwide.

Walmart can demonstrate that it truly is feasible for any employer to recruit, hire and retain employees with disabilities as part of a company’s overall commitment to diversity, and that the business benefits in many ways by doing so. By working collaboratively with relevant government agencies, educational institutions, and nonprofit developmental disability services, vocational rehabilitation and workforce development agencies, employers can build a robust pipeline of candidates with disabilities for all types of jobs.

Walmart, and other private sector employers that are not currently legally required to do so, could also establish voluntary systems of self-identification for job applicants and employees with disabilities, adopt disability employment goals, and annually reporting that data publicly. Today, both the Federal government, as an employer, and Federal contractors are required to have systems of self-identification and report on progress in meeting defined goals. However, these requirements don’t apply to other private sector employers, nor is the reporting made public.

Many private sector employers assume they are legally prohibited by the ADA from asking about an applicant’s disability status. Yet, as the U.S. Equal Employment Opportunity Commission has explained:

(T)he ADA does, however, provide an exception to the general rule prohibiting disability-related questions in the interview process. Under the ADA, an employer may invite applicants to voluntarily self-identify as individuals with disabilities for affirmative action purposes.1

Walmart and other private sector employers could truly be game changers in employment for people with disabilities by adopting self-identification and hiring goals, for affirmative action purposes, and then sharing and holding themselves accountable for the results.

Finally, Walmart should continue the active communication and candid dialogue it has engaged in with advocacy and social services organizations in the disability community over the past years. Walmart should share with the community the results of its efforts to place People Greeters with disabilities in other roles. It should continue and expand its efforts to work collaboratively with disability nonprofits to advance employment opportunities across the company and, as one of our country’s largest employers, across the nation.


1Recruiting, Hiring, Retaining and Promoting People with Disabilities – A Resource Guide for Employers, https://www.eeoc.gov/eeoc/interagency/upload/employing_people_with_disabilities_toolkit_february_3_2015_v4-2.pdf

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Workers Speak Out on Disability and Health: New Report on Paid Family Leave and the Disability Angle

Today, The Arc of the United States (The Arc) and the National Center for Children in Poverty (NCCP) at Columbia University’s Mailman School of Public Health are releasing Disability Perspectives on Paid Leave: A Qualitative Analysis of Leave-taking Among Workers Affected by Disabilities or Serious Health Conditions. This ground-breaking research examines how workers with disabilities and working caregivers of people with disabilities use, need, and benefit from paid family and medical leave. It is one of the only studies to specifically explore whether current paid and unpaid leave policies and programs for working individuals meet the needs of the disability community. Findings offer key insights on how existing leave policies can become more inclusive to this historically under-served group, and highlight the need for a comprehensive, national paid leave policy.

Researchers at NCCP conducted and analyzed in-depth interviews with 90 workers with disabilities and working caregivers in California, New Jersey, New York, and North Carolina. Major findings include:

  • Workers with disabilities and working caregivers take leave for diverse and often disability-specific reasons.
  • Workers want to maximize their time at work and benefit when they can use paid leave in conjunction with other employment benefits.
  • Workers highly value the Family and Medical Leave Act (FMLA) and state-administered paid leave options, which in this study included programs in California, New Jersey, and New York.
  • Multiple barriers and gaps limit workers’ access to leave, including fear of job loss and stigma against disabilities. In states with paid family and medical leave insurance, certain program features also limit access, including low awareness and understanding of the program, inadequate wage replacement, narrow or unclear covered reasons for leave, and inadequate coverage for self-employed and public workers.

Based on these findings, the paper provides recommendations for how policymakers, employers, and advocates can make it easier for all workers to take leave from work during a stressful period of their lives. Most importantly, the findings provide a road map for an inclusive national paid leave policy.

“Our goal with this paper is not only to inform, but also to expand the national dialogue to make paid leave policies and proposals stronger and more inclusive. As this study’s findings show, paid leave is extremely important for people with disabilities and their families, including people with intellectual and developmental disabilities. At The Arc, we believe that our nation can and should put in place an inclusive, comprehensive national paid leave policy that reflects the full range of workers’ leave needs, including people with disabilities and their families. We hope this paper provides the blueprint leaders need to advance this process,” said T.J. Sutcliffe, Senior Director, Income & Housing Policy, The Arc.

The need for paid family and medical leave is universal – nearly all of us will need paid leave at some point to care for a family member, address our own serious medical condition, or welcome a new child into our family. The disability perspective, however, has often been missing from the national conversations and research on paid leave, despite the fact that roughly 1 in 5 Americans has a disability. As such, there is a huge gap in understanding on how the disability community uses paid leave, the frequency of use of this benefit, and whether current federal and state policy frameworks and available paid leave programs meet the disability community’s needs.

“It is crucial to hear from working individuals directly affected by serious health conditions and disability to understand how paid leave policies can work better for them. Our in-depth conversations with workers revealed important patterns and policy considerations that deserve more discussion, such as the need for an inclusive definition of family and flexibility to take leave for myriad reasons. This study bolsters current survey research on disability and paid leave by contributing the lived experiences of working individuals,” said Dr. Heather Koball, Director of NCCP.

About the Study: This qualitative study aimed to (1) understand common usage patterns of unpaid and paid leave programs, (2) to assess the priorities of working caregivers and workers with disabilities regarding taking leave from work, and (3) pinpoint ways in which key stakeholders can better support this population of workers. The research team asked participants their reasons for taking leave and about their leave-taking patterns, as well as what factors influence their access to specific leave benefits.

The National Center for Children in Poverty (NCCP) is a non-partisan public policy research center at Columbia University’s Mailman School of Public Health. Founded in 1989 with endowments from the Carnegie Corporation of New York and the Ford Foundation, NCCP is dedicated to promoting the economic security, healthy development, and well-being of America’s low-income children and families. Using research to inform policy and practice, the center seeks to advance family-oriented solutions and strategic use of public resources at the state and national levels to produce positive outcomes for the next generation.

An advocate wearing a "disability rights are human rights" t shirt poses with past Wisconsin governor Scott Walker

The Arc Responds to Passage of Criminal Justice Reform by Congress

Washington, DC – Last week, both chambers of Congress passed a bill focusing on criminal justice reform, which President Trump signed into law. The legislation shortens sentences and supports job training and other programs for some prisoners with disabilities.

“We are pleased that Congress has chosen to begin comprehensive reform of our criminal justice system. While this is a step in the right direction, our hope is that future legislation provides support for individuals with intellectual and developmental disabilities (I/DD) involved in all phases of our criminal justice system, whether as victims, witnesses, suspects, defendants, or prisoners.

“This legislation funds training on de-escalation techniques for federal prison staff; this is particularly important for individuals with I/DD who are incarcerated. It is essential that future legislation supports training for law enforcement through all branches of government on recognizing and supporting the needs of individuals with disabilities. This training can ensure that an individual’s rights aren’t compromised and that they are provided the appropriate accommodations ensuring they are treated justly and don’t experience conditions that can be detrimental to their physical or mental health.

“The bipartisan support of this legislation is heartening, and we are grateful to Members of Congress for their work on this important issue. The Arc plans to be at the table as further criminal justice reform is discussed in the 116th Congress to ensure the interests of people with disabilities are included in future legislation,” said Peter V. Berns, CEO of The Arc.

While people with I/DD comprise 2 to 3% of the general population, they represent 4 to 10% of the prison population. Earlier this year, The Arc’s Criminal Justice Advisory Panel was launched. The panel is the latest addition to the organization’s National Center on Criminal Justice and Disability’s® (NCCJD) ongoing advocacy to protect the rights of people with I/DD involved in the criminal justice system.

Established in 2013, NCCJD is the only national center of its kind serving as a bridge between the I/DD and criminal justice communities that focuses on both victim and suspect/defendant/prisoner issues. The Center provides training and technical assistance; resources for professionals, people with disabilities, and their supporters; as well as educates the public about the intersection of criminal justice reform and the advancement of disability rights. Pathways to Justice®, NCCJD’s signature training tool, is a comprehensive, community-based program facilitated through chapters of The Arc that helps criminal justice professionals understand their legal obligations toward people with disabilities. NCCJD is building the capacity of the criminal justice system to respond appropriately to gaps in existing services for people with disabilities, focusing on people with I/DD, who often remain a hidden population within the criminal justice system, with little or no access to advocacy supports or services.

Two event attendees stand smiling with their arms around each other's shoulders.

The Arc Responds to Texas U.S. District Court Judge’s Ruling on the Affordable Care Act

The Arc Responds to Texas U.S. District Court Judge’s ruling that the Affordable Care Act is unconstitutional:

“This ruling by District Court Judge Reed O’Connor in Texas v. Azar is of great concern. To strike down the entirety of the Affordable Care Act (ACA) puts the health of millions at risk, but we know that this case will be appealed. While the ruling does not impact the law immediately, it has raised concerns and fears for millions who have benefited from the ACA. The ACA includes historic health care coverage expansions, nondiscrimination and health insurance reforms, numerous enhancements to Medicare, Medicaid, and other provisions that benefit people with disabilities. The fact remains that the ACA is the law of the land and health care coverage will not be impacted by this decision without further court appeals and decisions. We must also remember that the Supreme Court has upheld the constitutionality of the Affordable Care Act twice.

“This is about people’s lives – their health, independence, financial stability, and so much more. The Arc remains steadfast in our commitment to advocate for and protect this law and the benefits it provides for people with intellectual and developmental disabilities,” said Marty Ford, Senior Executive Officer for Public Policy for The Arc.

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Celebrating National Caregiver Month With The Arc Wisconsin

The Arc Wisconsin State Director Lisa Pugh stands in front of an exhibiting booth smiling and holding a computer. Each November, we observe National Caregiver Month – honoring those who devote their lives to providing care for individuals with intellectual and developmental disabilities.

The daily demands of caregiving for individuals with I/DD and elderly adults can be challenging, and the commitment of time and resources that goes into ensuring a loved one’s well-being leaves little time for personal goals, professional duties and planning for the future.

At The Arc Wisconsin, Lisa Pugh is working hard to take a leadership role in the fight to support caregivers throughout the state.  

One of the largest groups that make up the caregiving population are family members and loved ones. What is future planning and why is it important?

Future planning is creating a guide for a person with I/DD to lead a good life as independently as possible. A plan is important throughout all stages of life, especially during transitions, and especially in the future after the parent or caregiver is no longer able to provide support.

About 2/3 of the more than 50,000 people with I/DD in Wisconsin live with their families, and there are 16,500 vacant paid caregiver positions. In many of these families, the main caregivers are over age 60. When it comes to thinking about the future, Wisconsin families are like everyone else across the country- they don’t have a plan in place, even though they know they should.

Without a plan in place, those families can easily go into crisis. Many families feel overwhelmed, aren’t even aware of future planning options and resources, and need support to navigate the process.

Many families think future planning is mostly about finances – but good future planning is about so much more. It is about daily routines and future plans about where to live and work. It’s about growing people’s independence in their own decision-making. It really is a holistic look at someone’s life and how to secure and plan for their success and happiness.

What are you doing to meet this need?

We are working hard to expand access to future planning information. Trained planners help Wisconsin families work through common and difficult barriers. Since January 2018 we have trained 25 professionals who have supported more than 123 caregivers and families to begin development of a future plan. The Arc Wisconsin’s network of trained planners reached over 33 towns and cities.

We are also conducting outreach to identify systems barriers, advancing recommendations from a recent respite summit, and offering future planning workshops across the state.

You can learn more about our future planning efforts by watching this short video.

You were recently appointed co-chair of the Wisconsin Family and Caregiver Support Alliance. How can other chapters and organizations utilize coalition cooperation to better serve caregivers?

Caregiving as an issue that many populations are struggling with and many people are affected by. In our state, The Arc Wisconsin has chosen to work alongside aging and dementia advocacy groups to find solutions to support families. Our Alliance is tackling challenges in workgroups to address commonalities like lack of respite care, the need for caregiver support, complicated systems navigation, cultural competence and the need for employers to better support their caregiver employees. We are having success on all of these fronts by working together. In 2019, we plan to publish results of several surveys that we hope will lead to policy changes and perhaps redirected or new funding.

We will kick off this year’s Family Caregiver Month celebration with an Alliance press conference in the Governor’s Conference Room of our state capitol with storytelling by caregivers and presentation of a Governor’s proclamation.

What advice do you have for other chapters looking to expand their efforts in supporting caregivers?

Getting out and talking directly to caregivers has brought credibility to our efforts. Over the last year, The Arc Wisconsin has presented on future planning to groups of caregivers and professionals at Aging and Disability Resource Centers and at other events and conferences throughout the state. We have put on webinars, provided in-service training, and are widely distributing The Arc’s excellent future planning resources. Often communities are just starting to become aware of the fragile situations where elderly moms and dads have an adult son or daughter with I/DD living at home while they continue providing most or all of the care. Future planning is essential in these situations and chapters of The Arc are poised to lead the way in tackling it.