What Do Moms Need?

Last week, The Arc was excited to join nearly 50 national organizations that co-sponsored the #MomsDontNeed / #LasMamásNoNecesitan Tweet storm. On Twitter, we called attention to recent actions and policies that threaten mothers and families, and highlighted the kind of supports they and all people truly need to protect and advance their economic security, health, and more.

Moms with disabilities, and moms of children with disabilities, do so much. And across the nation, moms are working harder than ever. With Congress considering legislation to devastate our health care system, and with new reports of major cuts in the works to Medicaid, Social Security disability benefits, and other effective federal programs, so much is at stake – for moms, and for all of us. As The Arc celebrates Mother’s Day, here are three things that we know are vital to supporting mothers and their many contributions.

1. Access to Health Care and Long-Term Supports and Services. Health insurance under the Affordable Care Act can make all the difference in the world. Just listen to Lindsay, mother of toddler Calvin, if you’re not sure why. In addition, for many people with intellectual and developmental disabilities, Medicaid provides a range of essential medical and long-term supports and services that make community living a reality and for many, can be the difference between life and death. Unfortunately, the American Health Care Act (AHCA) – passed recently by the House of Representatives and now before the Senate – shows callous and dangerous disregard for the wellbeing of people with disabilities and their families. Among the bill’s many harmful provisions, the AHCA would decimate Medicaid, erase health insurance cost protections for people with pre-existing conditions, and cause people to lose essential health benefits under state waivers. The AHCA is one bill that #MomsDontNeed.

2. Economic Security. For most moms and families of children and adults with intellectual and developmental disabilities, every penny counts. For example, raising a child with disabilities can be tremendously expensive due to major out of pocket medical and related costs, like adaptive equipment and therapies. For many families, earnings from work aren’t enough to maintain a basic standard of living and cover these often-extraordinary disability-related costs. It’s only possible because of income from Social Security’s disability programs, including Supplemental Security Income (SSI). Unfortunately, recent news reports suggest that President Trump’s 2018 budget will propose major cuts to Social Security disability benefits, as well as Medicaid and a host of other programs – totaling $800 billion in cuts. That’s another devastating idea that #MomsDontNeed.

3. Paid Family and Medical Leave. Moms with disabilities, and moms of children with disabilities, know better than most that time is a precious resource. At The Arc, we hear often from moms and dads struggling to get enough paid time off work: to be with a new baby in the Neonatal Intensive Care Unit; to care for a new baby with disabilities when they first come home; to take their son or daughter to medical appointments, therapies, and after school programs; to attend IEP meetings and other school appointments – and so much more. And while we all love Wonder Woman, let’s face it, moms get sick, too. Moms shouldn’t have to choose between a pay check and a child’s health, or a pay check and their own health. Not moms, not anyone. That’s why The Arc is joining the call for a robust federal paid family and medical leave program. We hope you’ll #JoinOurFight!

School Privatization – What is Happening, and Should We be Concerned?

By Annie Acosta, Director of Fiscal and Family Support Policy

Social media is abuzz over a bill that would largely wipe out federal support for our current public elementary and secondary education system and replace it with vouchers for private schools or home schooling. This legislation, the Choices in Education Act of 2017 (H.R. 610), has two cosponsors (neither of whom are in the committee of jurisdiction) and has not advanced since its introduction in January.

Disability advocates might better target their energy for the President’s full Fiscal Year 2018 Budget Request expected in mid-May that is expected to include significant privatization efforts. In March, the President released a “skinny’ budget” that included brief plans to create a $250 million school voucher program and a $1 billion Elementary and Secondary Education Act Title I “portability” proposal. Title I currently provides about $15 billion per year to school districts with high numbers or high percentages of children from low-income families. The President’s portability proposal would allow for these public school dollars to follow students to the public schools of their choice, an option that many reasonably fear is a first step toward privatization. The Administration’s March proposal would ramp up portability to $20 billion over time – about a third of existing federal aid for education.

The bulk of this amount would go to “encouraging districts to adopt a system of student-based budgeting and open enrollment that enables Federal, State, and local funding to follow the student to the public school of his or her choice.” Unlike the current system where Districts create school budgets based largely on how much it costs to pay the salaries of school staff and maintain the facility, the proposed funding model would follow each student, no matter where they enroll. This could leave districts to choose among the following private school choice schemes that are already in existence, even if only on a small scale, across states:

School Vouchers or Scholarships. School district funds are allocated to families in the form a voucher to pay partial or full tuition. Twenty five states have such programs.
Tax Credit Scholarships – Taxpayers (individuals and businesses) receive full or partial tax credits for donating to nonprofits that provide private school scholarships. Twenty one states provide tax credit scholarships.
Education Savings Accounts – Parents receive a deposit of public funds into government-authorized savings accounts (often via debit card). The funds can cover private school tuition and fees, online learning programs, tutoring, etc. Five states operate education savings accounts.
Individual Tax Credits and Deductions – Parents receive income tax relief for approved educational expenses (such as tuition, books, tutoring, and transportation). Nine states provide individual tax credits and deductions for education expenses.

Aside from logistical concerns about how the President’s education plan would work, many education advocates are voicing concerns over draining public schools of students and funding. This may be of particular concern to special education students who typically benefit from economies of scale in public schools by sharing resources such as aides, therapists, and counselors. In addition, for special education students who are interested in taking advantage of the private school options in their state, it is important to note that most states do not require that students participating in these programs retain their full rights under the Individuals with Disabilities Education Act (IDEA). In fact, a number of states explicitly require that families relinquish their IDEA rights. These and other considerations are critical for families of students with disabilities to consider in deciding whether to support and/or take advantage of these programs that have increased significantly in recent years. Click here for a direct download of The Arc’s School Voucher Parent Decision Checklist.

Building the Bridge to Inclusion through Technology

Many day-to-day technology tasks have become so intuitive for many of us that it’s easy to forget life before these clicks and swipes. For people with I/DD, these skills can make a world of difference by building bridges to community participation.

In 2016, through our partnership with Comcast NBCUniversal, six chapters across the country hosted “Learning Labs” to foster digital literacy skills in their constituents. The classes’ content varied between chapters based on individual needs:

The Arc Baltimore (Maryland)
The Arc Baltimore’s labs provided an overview of Assistive Technology and a demonstration of devices and software to address communication, computer access, eating, environmental control, hearing, home safety, memory and cognition, telephone access, recreation, and vision. Stories were shared on how individuals have utilized devices. A certified Assistive Technology Professional worked one-on-one with participants to identify and experiment with tools that would be a good fit for them.

Easter Seals Arc of Northern IN (Indiana)
Easter Seals/The Arc of Northern Indiana hosted an instructional computer lab focusing on life skills, employment, internet safety, and money management. The session was so successful that one participant found a job he was interested during the class. The next day, he submitted an application online for that job at Game Stop and landed an interview.

The Arc of Prince George’s County (Maryland)
The Arc of PG County hosted labs covering topics related to independent living, including eating healthy, resume building, tech tools for reading, grocery shopping, job seeking/applications, money value, and understanding maps. At the conclusion of the event, local companies even pledged to employ more people with I/DD! One participant, Brianna, found a screen reader helpful—it helped her pronounce words correctly in addition to easier reading. She compared it to audible books and thinks it “unleashes the power of spoken words”.

NewStar Services (Illinois)
NewStar’s labs had a strong focus on iPad skills, including skills for independent living like taking pictures, iMovie, iModeling, maps, planning a trip, and setting and using reminders. Three Learning Lab participants, David, April, and Charles, requested additional labs on the Maps app, and were surprised to learn that there are bus stops extremely close to their houses that will help them gain independent access to the community.

The Arc of San Francisco (California)
The Arc of San Francisco’s labs were centered on using technology for independence and employment. Topics covered included internet safety, Microsoft, LinkedIn, online job searching, and the basics of email. One participant, Kristin, was struggling with how to best use LinkedIn. After working on her picture, resume, endorsements and recommendations in the lab, Kristin landed interviews at both Google and LinkedIn!

The Arc of Lane County (Oregon)
Topics on computer basics, including terminology, parts, safety/care, and typing, were covered. They worked in Microsoft Word, Publisher, Powerpoint, and used email and iPads. Most importantly, they learned about internet safety issues like identity theft protection, safe passwords, and digital footprints. “When asked about his favorite part of the class Jason exclaimed, “I was really excited to make my resume and get closer to my dream job”.

Through this simple exposure to the basics of digital technology, participants are building the skills that will support them to become more independent within their communities. We look forward to expanding Learning Labs to more chapters and building the skills to succeed in people across the country!

Navigating School – The Arc@School Launches Website to Help Students with Disabilities and Their Parents with Special Education Advocacy

“The secret in education lies in respecting the student.” – Ralph Waldo Emerson

Opportunities for students with intellectual and developmental disabilities (I/DD) have come a long way since children were warehoused in institutions with no future or a real education. One giant leap forward was the enactment of the Individuals with Disabilities Education Act (IDEA) in 1975, which for the first time required schools to educate all students with disabilities—including students with I/DD.

The IDEA lays out a process that schools must follow to identify which children with disabilities require additional services to learn, and which supports and services a child needs. That process often leads to the development and implementation of an individualized education program (IEP). The IEP is the roadmap for that child to succeed. The IDEA has led to a generation of people with I/DD whose education opened doors to employment and meaningful lives in the community. However, far too many families and students do not experience an IEP process where their role and their rights are clear and respected. Instead, they feel left out of the process, which is often overwhelming and confusing.

So in 2016, The Arc launched a new initiative, The Arc@School, to build the capacity of The Arc’s nationwide network of chapters to support students with I/DD and their families in developing and implementing IEPs that will help students with I/DD graduate from high school and pursue post-secondary education and employment.

Many students and their families seek advocates to help them understand the IEP process and their rights, and many chapters of The Arc provide lay special education advocacy services for students with I/DD and their families. The Arc@School’s newly-launched website aims to be an online resource for students with disabilities, their parents, and advocates that includes information, best practices, and a resource directory, where you can find links and contact information for chapters of The Arc, protection and advocacy programs, parent centers, and state education agencies in your state.

A successful IEP is the foundation for a future in the community, leading a life of one’s own choosing. If we are to improve outcomes for students with I/DD, we must follow Emerson’s guidance and focus on an IEP approach that respects the student’s goals to achieve his or her dreams.

From 1959 to Today, Workers Still Need Paid Leave

By Robin Shaffert, Senior Executive Officer, Individual and Family Support, The Arc 

KM_C554e-20161207133340Among my grandmother’s papers was a letter dated May 28, 1959, from her employer, the New York retailer Franklin Simon, informing her, “Due to the fact that your illness will be prolonged over a period of time, we have been forced to replace you at this time.”

“However,” the letter continues, “[W]e wish to let you know that your record with us has been good, and we will be happy to consider you for an opening when you are able to return to work again.” She received “two weeks vacation salary which is due you,” but no sick leave or notice pay.

I was shocked. My grandmother had been fired because she needed surgery. When I found the letter a few years ago, the Family and Medical Leave Act had been the law for almost 20 years. Large employers like Franklin Simon couldn’t just fire employees when they needed time off for medical care. Or, at least, they couldn’t fire many of their full time employees.

Born in Austria-Hungary in 1900, my grandmother came to this country with her husband and her son as a refugee from the Nazis in 1940. A housewife in Vienna, here she worked first in a factory sewing clothes for dolls and later as a saleswoman at Franklin Simon.

By 1959, my grandmother was living alone in a fourth floor walk-up in the Bronx. Her husband had died, and her only son was married and had a new baby. I don’t know what financial hardship my grandmother endured when she lost her job. As far as I know, she never reentered the workforce.

Being able to take time off from work for my own medical care, after the birth of my children, and to care for my parents and my sister who had congenital heart disease is only one of the many ways that life has been easier for me than it was for my grandmother. But even today many people can still be fired if they need to take time off from work. And, for many unpaid leave is an empty promise because they simply can’t afford to take time off without pay.

At The Arc, our mission is to promote and protect the human rights of people with intellectual and developmental disabilities (I/DD) and actively support their full inclusion and participation in the community throughout their lifetimes. People with disabilities and their family members are an important part of the American workforce, and like all working people, they need access to paid leave. In my work, leading the Center for Future Planning®, I focus on the needs of the over 800,000 families in which adults with I/DD live with aging caregivers 60 and over. As these parents age and continue to support their sons and daughters to build full and independent lives, the need for flexibility can be critical.

We are joining the call for a robust federal paid family and medical leave law that adheres to a core set of principles. All employees (regardless of the size of the employer, length of service, and number of hours worked) must be able to access paid leave of meaningful length. People need to take leave for different reasons, and all employees should be able to access paid leave for the full range of personal medical and family caregiving needs established in the Family and Medical Leave Act. Families come in many shapes and sizes, so “family” must be inclusively defined. We must design a program that is affordable and cost-effective for workers, employers, and the government. Finally, we must ensure that people who take the leave do not experience adverse employment consequences as a result.

In the disability community, we know how important it is to celebrate one another in good times and to provide support in harder times. An inclusive and robust paid family leave program is an important building block of that support.

Chapter Volunteers Reduce Food Insecurity Through Community Service

meals-on-wheels-volunteersBy Nancy Stubbs, Development Director, The Arc Nature Coast

On October 16th, we recognize World Food Day. According to the Corporation for National and Community Service (CNCS), 49 million people in the United States – including 16 million children, do not have reliable access to affordable, nutritious food. Providing food assistance is one way that communities can help improve all people’s access to healthy food. Through funding from CNCS, The Arc helps 10 chapters around the country organize service projects that aid community members in need.

Our chapters partnered with local service clubs and hunger-focused groups (e.g., community food banks, food pantries, soup kitchens) on events around the 2016 and 2017 Martin Luther King, Jr. Day of Service, and throughout the year to provide food assistance to community members who experience food insecurity. In the first year of funding, our chapters have recruited 690 volunteers who have contributed over 5,360 hours of service to feed over 9,833 people in need.

One such chapter, The Arc Nature Coast in Brooksville, Florida, addressed their lack of access to nutritious food by delivering local produce to nearby food banks, which typically serve canned and/or processed foods. First, The Arc Nature Coast met with local farmers to learn what fresh fruits and vegetables were in season. Next, The Arc Nature Coast partnered with the farmers to distribute fresh produce to 235 recipients at four different food banks. Additionally, The Arc Nature Coast partnered with their local Meals-on-Wheels program to deliver meals to senior citizens on a weekly basis.

Both projects enabled individuals with intellectual/developmental disabilities to work alongside farmers and volunteers. Feedback from volunteers with disabilities has been very positive, and suggests that participation had a positive effect on their self-esteem and feelings of inclusion. One volunteer stated, “They (recipients of Meals on Wheels) are counting on me to be there to bring them their food. They wouldn’t have food to eat if I didn’t help them.” Another added that, “it makes me feel good to help people.”

A Conversation with Dr. Brian Armour About Oral Health of People with and Without Disabilities

Patient - teeth checkBrian Armour, PhD is an economist with the Centers for Disease Control and Prevention (CDC). He has spent over 15 years in health services research, including work on helping design the CDC Disability and Health Data (http://dhds.cdc.gov/). We asked Brian to discuss findings from the study he led, entitled “A Profile of State-level Differences in the Oral Health of People with and Without Disabilities, in the U.S., in 2004” (Armour BS, Swanson M, Waldman HB, Perlman SP. Public Health Rep. 2008 Jan-Feb;123(1):67-75).

Why did you want to study state-level differences in oral health of people with disabilities?
While there have been disability-specific studies about oral health, no state-level analysis of the oral health of people with disabilities was available. We wanted to assess the oral health of people with disabilities in each state.

Oral health is as important as other types of health care; and good oral health improves general health, self-esteem, communication, nutrition, and quality of life.

What did you discover?
In the year we observed, people with disabilities were less likely than people without disabilities to visit a dentist or dental clinic. They were more likely to have experienced tooth loss.

Our study showed very different results among states. People with disabilities from Mississippi were much less likely than people with disabilities in Connecticut to have visited the dentist or dental clinic in the last year. Only four percent of people with disabilities in the District of Columbia reported having tooth loss as opposed to almost 19 percent of people with disabilities in Kentucky.

What does this mean for people with disabilities and their families?
It is important for everyone, especially for people with disabilities, to practice good oral health habits, like brushing their teeth regularly and flossing. People who need help finding good oral health habits can visit the “Oral Health” section of the CDC website.

Sometimes, people with disabilities – particularly intellectual or developmental disabilities – need assistance from their families and caregivers to help them practice good oral health. If caregivers need tips on how to promote good oral heath, they can check out “Dental Care Every Day: A Caregiver’s Guide” from the National Institute on Health.

A Conversation with Brian Armour About Disability Prevalence Among Healthy Weight, Overweight, and Obese Adults

Patient-assessors-weist-measure

Brian Armour, PhD is an economist with the Centers for Disease Control and Prevention (CDC).  He has spent over 15 years in health services research, including work on helping design the CDC Disability and Health Data System (http://dhds.cdc.gov/). We asked Brian to discuss findings from the study he led, entitled Estimating Disability Prevalence Among Adults by Body Mass Index: 2003–2009 National Health Interview Survey” (Armour BS, Courtney-Long E, Campbell VA, Wethington HR. Prev Chronic Dis. 2012; 9: E178. Published online 2012 December 27).

In your article, you assess the number of people who are obese, overweight, or healthy weight and who report having a disability. Why do you think it is important to look at whether people who have weight issues also have disabilities?
This information can help public health programs better recognize the need to design obesity prevention and treatment programs that are inclusive of people with disabilities.

What did you find out?
We found that 41 percent of US adults who are obese also reported having a disability. We also found out that mobility limitation was one of the most frequently reported types of disability among people who are obese.

What does this mean for public health programs?
Public health programs should be considering the needs of those with disabilities when designing their obesity prevention and treatment programs. There are many resources public health organizations can use to help make sure that they are thinking of the needs of people with disabilities. Two good resources include the “Disability Inclusion” section on the CDC’s website as well as the Inclusive Community Health Implementation Package (iChip) program run by the National Center on Health and Physical Activity for People with Disabilities (NCHPAD).

Do you have any recommendations for people with disabilities on how to maintain their weight and avoid becoming obese?
Everyone is different, but it is important that we all are physically active, eat better, and talk to a doctor when not feeling well! People who need help keeping a healthy weight can check out the “Healthy Weight” section of the CDC website for tools to use to help maintain a healthy weight.

Is there anything else you want to say?
Identifying health issues that people with disabilities experience is important, but we also need to help improve the health of people with disabilities by promoting inclusion. This means making sure that people with disabilities are included in all aspects of community life—in our gyms, healthy eating programs, walking paths, transportation and more.

Financial Capability Creates Independence

By Robin Shaffert, Senior Executive Officer, Individual & Family Support, The Arc

One of the four goals of the Americans with Disabilities Act is economic self-sufficiency. Yet, far too many people with disabilities continue to live in poverty. In 2015, the poverty rate for working aged individuals (16 – 64) with disabilities was 28.5%, compared to a poverty rate of people without disabilities of 12.4%; the poverty rates for children with disabilities are also disproportionately high.

There is no single reason for this high rate of poverty. Similarly, there is no single change that will end poverty for people with disabilities.  Employment rates are far too low, and often many people with disabilities who are employed are under-employed in low paying jobs.  Many people with disabilities rely on means-tested benefits to finance their supports and services. In fact, the very income and asset eligibility requirement of these benefit programs limit beneficiaries’ ability to earn income and build assets. The passage last year of the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act provides the first opportunity for people with disabilities to build assets without jeopardizing their benefits from means-tested programs.

Disability-related expenses often create an additional financial burden.  In families that have a child with disabilities, parents often reduce their work hours or leave the workforce altogether to care for their child with a disability, resulting in lower family income. More states and localities are enacting paid sick days and paid family leave laws, and more employers are incorporating policies that enable increased workplace flexibility.  Each of these efforts should contribute to lowering the poverty rate for people with disabilities and their families.

Proclaiming April 2016 as National Financial Capability Month, President Obama reminded us, “When every American has the tools they need to get ahead and contribute to our country’s success, we are all better off. . . . Ensuring people have the resources to make informed decisions about their finances is critical in this effort, and during National Financial Capability Month, we recommit to equipping individuals with the knowledge and protections necessary to secure a stable financial future for themselves and their families.”

Financial literacy is a critical tool in this fight to reduce poverty in the disability community.  Developing financial capability skills should be a goal for young people with disabilities throughout their school years.  In the early years, all children should be taught basic concepts related to math and money and should begin to develop decision-making skills.  As they grow, the lessons should become more complex to move them towards financial independence. An important way we can support families is to not only guide parents of children with disabilities through the public benefit system but to also help them build skills to stabilize the family’s financial situation.

The Arc and our partners in the disability community are working tirelessly to increase employment and income of people with disabilities.  For adults with disabilities, increasing financial capability is an important part of planning for a good and independent life in the community.  For more information about creating a plan to Finance the Future, visit The Arc’s Center for Future Planning.

Vote!

“Vote as if your life depends on it,” Justin Dart, Jr., the disability rights pioneer often known as the father of the Americans with Disabilities Act, implored us, “Because it does.”

Our core values call us to focus on voting during Developmental Disabilities Awareness Month in this critical election year.  The Arc’s core value of community underscores that “people with intellectual and developmental disabilities . . . have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society.” Our core value of self-determination provides, “People with intellectual and developmental disabilities, with appropriate resources and supports, can make decisions about their own lives and must be heard on issues that affect their well-being.”

Voting is the most fundamental civil right.  By exercising the right to vote, people have a say in how our democracy moves forward.  As we advocate together for the full inclusion of people with disabilities in our communities, people with disabilities must have an equal say in how our society operates.  Through voting, people with intellectual and developmental disabilities (I/DD) exercise that voice equally with all members of their communities.

By advocating on the issues they care about and supporting candidates who will fight for their agendas, people with I/DD exercise their right to self-determination.  The disability community gains power by showing candidates that it will support those who advocate with us.

Unfortunately, some – but not all – states automatically deprive people with disabilities who are under guardianship of the right to vote. In other states, people with I/DD with guardians retain the right to vote unless a court specifically finds the person ineligible to vote. Self-Advocates Becoming Empowered (SABE) provides guidance on knowing your right to vote if you have a guardian: http://www.sabeusa.org/voting-and-guardianship/. Voting is a core civil right, and people with disabilities should not automatically lose that right if they are under guardianship.  We must fight to change these laws.

The implications of guardianship are far reaching.  It has long been The Arc’s position that most people with I/DD can manage their own affairs with assistance and guidance from others, and that if guardianship is necessary it should be limited and tailored.  Before considering guardianship, people with I/DD and their families should explore the many less restrictive ways that people with I/DD can receive support to make decisions.  The individual and his or her family should understand all of the implications of limiting the person’s autonomy and transferring his or her rights to a guardian, including the possibility that the person will be deprived of the right to vote. For more information on informal and formal ways to support people with I/DD to make their own decisions, visit The Arc’s Center for Future Planning: https://futureplanning.thearc.org/pages/learn/where-to-start/supporting-daily-and-major-life-decisions.

Even if a person has been deprived of the right to vote, he or she can still actively participate during this election season by supporting candidates and advocating on issues.  Let’s make sure the voices of people with I/DD are heard and that the candidates understand our messages.  And, let’s fight to change laws that deprive people with I/DD of their civil rights.