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.

Impact of the Public Charge Rule Change on People with Disabilities

Written in partnership with:

What is the Public Charge rule?

On October 10, the Department of Homeland Security announced the “public charge” rule. This rule allows the U.S. to keep out people who may become a “public charge.” Someone is called a “public charge” if the government thinks you might depend on government benefits to meet your needs. Someone who is called a “public charge” will be discriminated against if they try to enter the U.S. (get a visa) or get a green card (become a permanent resident).

The proposed rule is unfair, dangerous, and blatantly discriminatory. The rule would exclude people from this country simply because they have a disability.

The U.S. has already had a public charge rule for a long time. The new rule will make things much worse. Under the old rule, someone was only considered a public charge if they used cash benefits, like social security or TANF, or if they lived in an institution. The new rule uses a much bigger list of programs and benefits, and it also looks at other things like someone’s health and income.

The Rule Discourages the Use of Important Programs and Benefits

The new rule will discourage families from using important services for fear of harming their immigration status. People with disabilities and our families often need to use government benefits in order to stay fed, housed, and healthy. Under the new rule, using–or even just applying for–these benefits will count against us. Some of the programs and benefits that will count against us under this new rule are:

  • Medicaid
  • Food stamps, or SNAP
  • Medicare Part D assistance
  • Section 8 housing assistance
  • Children’s Health Insurance Program, or CHIP (they are still deciding whether to include this program)

In addition, the rule will also look at someone’s income. If someone or their family is lowincome, that will count against them.

The Rule is An Attack on Medicaid

The public charge rule is another attack on the basic services people with disabilities receive through Medicaid. The new rule includes the Medicaid-funded services that help people with disabilities stay in our homes, work, go to school, and live in our communities. These services are sometimes called waiver services, personal care services, nursing services, respite, intensive mental health services, and employment supports.

This creates an unfair choice for people with disabilities and our families. Medicaid is the only source for community living supports for people with disabilities. Community services simply aren’t available under private insurance. This rule will force immigrant families to choose between surviving without needed community services or being denied entry into this country just because their family member has a disability and might need services.

The Rule Discriminates Against People with Disabilities

The proposed rule directly discriminates against people with disabilities and chronic health conditions. In addition to benefits, the rule looks at a person’s health to decide if they will become a public charge. If someone has certain medical conditions, that counts against them. If someone doesn’t have a medical condition or a disability, the rule says that is a “positive factor.” This is unfair and discriminatory to people with disabilities and chronic health conditions.

The rule specially calls out people with the “most expensive health conditions,” including:

  • Heart disease
  • Cancer
  • Trauma
  • Mental health conditions

The rule also looks at whether or not a person can obtain private health insurance to pay for the medical costs the government thinks they will have because of their chronic health condition or disability. If someone doesn’t have health insurance, that counts against them. But because many important community services are only available through Medicaid and are not covered by private insurance, many people with disabilities won’t pass this test.

In other words, the proposed rule would exclude people with disabilities simply because they have a disability.

The Rule Isn’t Final Yet

If the new rule is put into practice, it will hurt many immigrants and immigrant families, including people with disabilities. But there is still time. For the next 60 days, the Department of Homeland Security is taking comments on the rule. Anyone can comment on the rule, and the government is required to read and respond to the comments. It is critical that the disability community sends in as many comments as possible explaining why this rule is dangerous and discriminatory and why it should not be put into practice. If we all speak up, we can keep this rule from being implemented.

For more information, please visit https://medicaid.publicrep.org/feature/public-charge/ and https://protectingimmigrantfamilies.org/. These websites include information and resources on how to comment.

For more information on this and other topics, visit

  • www.thearc.org
  • ASAN: autisticadvocacy.org
  • CPR: centerforpublicrep.org

 

The Arc of Loudoun Gets in the Halloween Spirit

Actors from The Arc of Loudoun County haunted house pose together in their costumes. The Arc of Loudoun and its Executive Director Lisa Kimball sure do know how to get in the Halloween spirit.
SHOCKTOBER, Northern Virginia’s only REAL haunted house experience, has been a destination event for almost a decade. The signature fundraising event has become so successful that last year, it accounted for almost 50% of the chapter’s fundraising budget. SHOCKTOBER is recognized as one of the best haunted houses in the DC/MD/VA area, and has provided an opportunity to build strong community partnerships, give back to the community, and more.

 

Fundraising is essential for any chapter of The Arc. Can you tell us a little about your chapter’s fundraising success? Do you find more success with individual giving in your region, or signature events like the Shocktober fundraiser?

As is the case for any nonprofit, fundraising is essential to our success, enabling us to fulfill our mission to empower, embrace, and engage adults and children with disabilities and their families. Our signature fundraisers include traditional fare. Our hallmark fundraising event, however, is very much off-the-beaten-path. We have a haunted house on our campus – not just the usual run-of-the-mill haunted house, but a 150-year old historical mansion that’s transformed into a thoroughly professional, PG-13-level haunt that requires guests to sign waivers before beginning their tours!

From a first-year gross revenue of about $40k (which absolutely thrilled us), we’ve grown to 2017’s 12,000 guests and more than $400k in gross revenue – which equated to almost 50% of our fundraising budget for last year. The exponential growth can be attributed to the expertise and detail that goes into each year’s haunt. SHOCKTOBER is recognized as one of the best haunted houses in the D-M-V, and we welcome haunt aficionados from all over the country and, occasionally, from other countries as well.

Can you give us a little history of the success of this event and other fundraising endeavors for your chapter?

SHOCKTOBER, Northern Virginia’s only REAL haunted house experience, has been a destination event for almost a decade.

SHOCKTOBER has matured into a destination event that includes a carnival atmosphere complete with t-shirts, fun merchandise, line entertainment, food and drinks all available on site (“liquid courage” can be found in the beer and wine tent!). New this year, in conjunction with our beloved community partners – 16 of them our ‘top-tier’ supporters – we’ve launched the “Trail of Terror”, a 3-day guide through Loudoun County to experience breweries, wineries, restaurants, and places to stay, all with a haunted twist.

How are you using this fundraiser/other events like it to build awareness and partnerships within your community?

All of this is made successful through our partnerships with multiple state and local tourism-centered organizations. Visit Loudoun, Loudoun County Tourism, and the Commonwealth of Virginia are all committed to supporting The Arc of Loudoun’s mission by granting advertising dollars to support SHOCKTOBER marketing efforts, spreading the word during meetings around the County to increase awareness of The Arc of Loudoun’s service offerings, and by “walking the talk” of embracing our community’s I/DD members. Each year the Town of Leesburg and the Loudoun County government eagerly participate in SHOCKTOBER; the Mayor of Leesburg looks forward each season to kicking off the event with an official ribbon ‘slashing’.

How does this particular event highlight the mission of The Arc of Loudoun and involve leaders throughout your network, including people with I/DD?

SHOCKTOBER is not just an exceptional fundraising extravaganza; it’s also an opportunity for The Arc of Loudoun to give back to our community. We award five $1k grants to fellow Loudoun County nonprofits whose missions include support for people with I/DD through our annual “We Scare Because We Care” campaign. Additionally, just as our supporters bring their money, time and talent to The Arc, The Arc gives back to our volunteers by providing outstanding educational and social opportunities for area high school students, most of whom return year after year to volunteer. Several of our volunteers (actors as well as those in concession and ticket sales positions) are people with intellectual, developmental and/or physical disabilities, and the five weeks of SHOCKTOBER at The Arc of Loudoun offer a unique experience where everyone is accepted and embraced for exactly who they are and honored for what they bring to the event.

The Arc on Proposed Rule from The Trump Administration That Would Impact People with Disabilities Legally Residing in the US and Seeking to Legally Immigrate

Following the draft notice of proposed rulemaking (NPRM) that would impact people with intellectual and developmental disabilities (I/DD) who are legally residing in the United States as well as people with I/DD who are hoping to legally immigrate, The Arc released the following statement:

“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the proposed rule released by the Department of Homeland Security. If finalized and administered as is, this rule would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country.  To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.

“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.

“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before.  But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.

“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.

“We will be offering comments to this proposed rule and hope other organizations and individuals will do the same. It would be disgraceful if this were to be adopted as a final rule.  We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” said Peter Berns, CEO of The Arc.

The Arc Responds to Norm Macdonald’s Down Syndrome Comment

The Arc released the following statement in response to Norm Macdonald’s remarks about people with Down syndrome:

“It is disheartening that yet again we need to remind a public figure to show respect for people with intellectual and developmental disabilities.  What is particularly disturbing about Norm Macdonald’s comment is that in his attempt to explain away his insensitivity to the #MeToo movement, he chose to mock a group of people who have a much greater understanding of victimization than he does.

“People with intellectual and developmental disabilities are seven times more likely to be victims of sexual assault than those without disabilities. Mr. Macdonald’s comment is doubly offensive and shows his ignorance about the disability community. We welcome the opportunity to educate Mr. Macdonald about the disability rights movement and hope that in the future he will show more respect for millions of people with disabilities, their families, and all victims of sexual assault,” said Peter Berns, CEO of The Arc.

Anthony Nash Says #HandsOff During August Recess!

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

Anthony Nash stands in front of the Capitol building in Washington DC wearing a long sleeve burgundy shirt and slacks. During August Recess, Members of Congress return to their home states to meet with their constituents. It’s the perfect time for advocates to meet with legislators and tell them #HandsOff important programs – like Medicaid, Supplemental Security Income (SSI), Supplemental Nutrition Assistance Program (SNAP) and much more.

Nobody says #HandsOff during August Recess better than Anthony Nash! Anthony is an active self-advocate in his home state of Washington. He is a member of The Arc’s National Council of Self-Advocates and The Arc of Washington’s Self-Advocates in Leadership (SAIL) coalition. Anthony also serves on the Washington State Developmental Disabilities Council and the board of Disability Rights Washington.

Anthony has fought for issues important to people with disabilities for several years. Here’s what he had to say about advocacy during August Recess:

How did you get involved in advocacy?

I used to work in a sheltered workshop. I got pushed around a lot and even called the r-word there. So one day, I went to the library and asked the librarian for books on disability rights. I read about how people with disabilities have [the same] equal rights as any other person. After that, I joined some advocacy groups and started to stand up for myself.

What does being a self-advocate mean to you?

Self-advocacy means quite a bit to me. A lot of people look down on people with disabilities and think we can’t amount to anything. I do everything I can to prove them wrong. Being a self-advocate lets me show others that we are equal, that we deserve respect, and that we should not be discriminated against in any manner.

Why do you think it is important for people with disabilities to advocate for programs like Medicaid and Supplemental Security Income (SSI) during August Recess?

These programs are our lifeline! Most of our leaders don’t understand that these programs cover significant needs. Since I was four years old, SSI has helped to pay for my food, clothes, transportation, and other living expenses. I use Medicaid to pay for the medicine and doctor visits I need. Self-advocates need to speak up during August Recess when legislators are back home so they know why these programs are important to us.

 

Ready to join Anthony in saying #HandsOff during August Recess? Take a few minutes to call YOUR Members of Congress and tell them why Medicaid and SSI are important to you. Then encourage your family and friends to call, too!

The Arc Condemns Plan to Fund Paid Leave by Putting Retirement Security at Risk

Today, Senator Marco Rubio (R-FL) introduced legislation to provide new parents with a partially-paid leave benefit, funded by cutting their future Social Security retirement benefits. Representative Ann Wagner (R-MO) has indicated that she plans to introduce similar legislation in September.

“While we appreciate Senator Rubio and Representative Wagner turning their attention to paid leave, this legislation completely misses the mark. It is unconscionable to make workers choose between time with their family after the birth or adoption of a child and a secure retirement.

“In addition, this legislation offers a very limited benefit that won’t meet the needs of many families, such as parents who need extended leave to care for an infant born with multiple disabilities. Furthermore, this plan doesn’t address the most common reason workers take leave – namely, to address a serious illness of their own or of a family member.

“It is shocking that the authors of this bill think that asking people to sacrifice their future financial security for time with their family is appropriate or a solution.  Our nation can and should put in place an inclusive and fiscally responsible paid leave policy that reflects the full range of workers’ leave needs, including people with disabilities and their families. The Arc calls on Congress to reject the Rubio/Wagner plan and the harmful trade-offs that it promotes,” said Peter V. Berns, CEO of The Arc.

A 2017 research paper by The Arc and the Georgetown Center on Poverty and Inequality found that workers with disabilities and working family members of people with disabilities face significant barriers to economic security and stability. On average, lower incomes and added disability-related costs leave many people with disabilities and their families disproportionately living in or near poverty, including in old age. These findings highlight the importance of paid family and medical leave and Social Security to the financial well-being of people with disabilities and their families.

The Arc recently released the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017. The FINDS Survey results highlight the challenges faced by caregivers of people with intellectual and developmental disabilities (I/DD) in our nation. With respondents reporting an average of 57 hours of support provided to their loved one each week, 95% of caregivers reported being stressed and nearly 50% reporting being very or extremely stressed. Nearly 90% of caregivers reported that partial paid leave would be helpful to them as they support their loved one with I/DD.

The Arc Responds to the Trump Administration’s Final Rule on Short-Term Limited Duration Insurance

Today, the Department of Health and Human Services released the final “short-term plan” rule. These “short-term plans” can provide hollow coverage with hidden gaps for those who sign up. Expanding short-term plans will raise premiums and reduce plan choices for individuals and employers in the regular insurance market.

The proposal expands availability of a group of products that may implement discriminatory practices. This will likely draw healthier individuals off the Marketplace by offering them skinnier, medically-underwritten products, which will inflate prices and out-of-pocket costs on the Marketplace. The Arc believes that insurance coverage must ensure access to timely, affordable, high quality, and comprehensive health care that meets the needs of individuals with disabilities and chronic conditions.

Expanding access to short-term plans will move us even further away from achieving these goals. Short-term plans are not subject to consumer protections that have tremendous value for individuals with disabilities and chronic conditions, such as mandated essential health benefits, protections for people with pre-existing conditions, prohibitions on use of lifetime or annual caps, and other non-discrimination provisions.  For these reasons, The Arc, in partnership with a coalition of other disability rights organizations known as the Consortium for Citizens with Disabilities, released comments earlier this year opposing this rule.

“The Affordable Care Act ended the practice of discriminatory health insurance practices; this rule allows insurance companies to once again set higher premiums based on health conditions. This limits access to comprehensive coverage and that will have a dire impact on people with significant health issues, like individuals with chronic illness and disabilities.

“Make no mistake, today’s final rule undermines current law and puts Americans with pre-existing conditions at risk. We remain steadfast in our commitment to protect the Affordable Care Act and the benefits it provides for people with disabilities,” said Julie Ward, Deputy Executive Officer for Public Policy, The Arc.

The Arc Celebrates the 28th Anniversary of the Americans with Disabilities Act

ADA Bday Graphic

Today, marks the 28th anniversary of the Americans with Disabilities Act (ADA). The ADA affirms the rights of citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities, and telecommunications. It is a wide-ranging law intended to make our society accessible to people with disabilities.

“Today we celebrate one of the greatest victories for people with disabilities in America. Our nation leads the world in respecting and valuing the lives of people with disabilities, fighting tirelessly to promote their rights through landmark legislation like the ADA. The passage of this transformative legislation would not have been possible without the hard work of Congressional leaders and disability advocates. While today we celebrate, we must also recognize recent threats to the ADA and the need for unity in our community. The Arc played a leadership role in the passage of the ADA nearly three decades ago and we remain committed to everything this landmark law stands for. We will actively oppose any attempts to weaken or dismantle the ADA,” said Mary Ford, Senior Executive Officer of Public Policy, The Arc.

REV UP for National Disability Voter Registration Week, July 16-20

July 16-20, 2018 is National Disability Voter Registration Week (NDVRW)! The REV UP Campaign, organized by the American Association of People with Disabilities, coordinates NDVRW each year to get people with disabilities registered to vote, educated about the upcoming election, and ready to cast their ballots. REV UP stands for Register! Educate! Vote! Use Your Power! The campaign aims to increase the engagement of the disability community around voting. Across the country, many chapters of The Arc are coordinating events in their communities for NDVRW in partnership with REV UP.

NDVRW is especially important this year because 2018 is big election year, with elections on the federal, state and local levels. People with disabilities have powerful potential to make their perspectives heard by voting. According to a research report from Rutgers University, there were 35.4 million eligible voters with disabilities in 2016. When we include family members of people with disabilities, the disability community makes up 25% of the total electorate. Yet, people with disabilities often face barriers to voting which often leads to the registering and voting in lower numbers than people without disabilities. Let’s change that!

Ready to celebrate NDVRW and make your voice heard? Here’s how you can get involved:

Image says "Register to vote today: National Disability Voter Registration Week July 16-20" and shows a pen filling in a voting ballot.

  • Register to Vote – Make sure you are registered to vote and your registration is up to date.
  • Register your Friends – Spread the word! Make sure your family and friends are registered to vote, too.
  • Find Out More – Registering is just the first step! To learn more about state laws, where to vote, specific elections, and more, visit The Arc’s Know Your Right to Vote webpage and Self Advocates Becoming Empowered GoVoter site.