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New Data Reveals Our Nation Is Failing to Support People With Intellectual and Developmental Disabilities

/in /by The Arc

Washington, DC – The Arc of the United States released the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017 today. The intent of this one-of-a-kind survey, conducted by The University of Minnesota’s Institute on Community Integration in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with intellectual or other developmental disabilities (IDD). This is the second FINDS Report that The Arc has released; the first was conducted in 2010, and released in 2011.

An estimated 7.3 million people with IDD live in the United States, with the majority living in their family home and receiving support from a family member. The report includes survey responses from over 3,000 caregivers and provides information on the economic implications, logistical challenges, and major gaps that exist in caregiving infrastructure.

The FINDS Survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. The study revealed that:

  • 80% of individuals with IDD live with a caregiver who is their family member. Alternatively, access to affordable and accessible housing outside a family home, in a setting with adequate supports, remains a challenge for people with IDD.
  • Most caregivers (54%) reported that they did not have a plan for the future. Caregivers share a long list of concerns about what will happen to their loved one with disabilities when they are no longer able to support them. Planning ahead can help guide a person with IDD to lead a good life as independently as possible. A plan is important throughout all stages of life and especially in the future after the parent or caregiver is no longer able to provide support.
  • 50% of individuals with IDD leave high school without a high school diploma. This is concerning because having a high school diploma is crucial in being considered in a competitive job market.
  • Only a minority of individuals with IDD are fortunate enough to be employed, and on average they work only 26 hours per two-week period. There is lack in diversity of the type of work being done; sixty percent (60%) of those employed work in retail, janitorial, landscaping, or food service jobs.
  • More than 3 out of 4 survey respondents described that since becoming a caregiver they are more aware of policy issues and more involved in advocacy, including calling their legislators. Ninety-five percent (95%) say that they vote, much higher than is typical for the voting age population as a whole.

The FINDS Survey results highlight the challenges faced by caregivers 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. This affects the ability of caregivers to meet their own personal needs, balance family responsibilities, and fulfill professional obligations. Almost all survey respondents who were employed reported that caregiving had a negative impact on their work, whether it was cutting back their hours, turning down promotions, taking a leave of absence, or giving up work entirely to meet the needs of their loved one.

Caregivers also reported that they would like their employers to do more to help them be successful in balancing their work and family responsibilities, such as provide medical and dental insurance, flexible spending accounts, flexible scheduling, and supportive and understanding supervisors and co-workers.

“In every aspect of life – from education, to employment, to planning for a stable future – we as a society are failing in our support of caregivers of people with disabilities and falling short of our obligation to improve the quality of life of people with disabilities. This report paints a picture of the day-to-day needs of caregivers, and should ignite action to address the gaps that stop us from achieving full inclusion of people with disabilities in the community throughout their lifetime.

“People with disabilities have an undeniable and moral right to be fully included in all aspects of society. As the largest civil rights organization for people with intellectual and developmental disabilities nationwide, we will continue our advocacy to ensure that supports are in place to promote the human and civil rights of people with disabilities.

“Too often, we in the disability community preach to the choir. This report should raise awareness and help engage new activists to our cause from all walks of life. People with disabilities in our nation have faced decades of discrimination and overcome much adversity, but we still have a long way to go before we have a truly inclusive society. The FINDS Report highlights areas we need to focus on and should serve as a rallying cry to advocates nationwide who recognize people with disabilities and their families deserve better,” says Peter V. Berns, CEO of The Arc.

About the FINDS Survey
The FINDS survey was implemented primarily using an on-line survey between January and March of 2017. The survey was also made available in English and Spanish paper versions. Caregivers who were family members or friends of people with IDD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with IDD was in a paid role were not included in the sample.

More than 3,000 people (3,398) met the criteria to be included in the survey and consented to partici­pate. Caregivers were surveyed including respondents from all 50 states, DC, Puerto Rico, and Guam. The number of people responding was large and provides important information about the experiences and outcomes of family caregivers of individuals with IDD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Stories Make Us Stronger: Please Share Yours Through the 2017 FINDS Survey

/in /by The Arc

By: Amie Lulinski, PhD, FAAIDD, Director, Research and Evaluation

Data comes in a variety of forms: charts, graphs, spreadsheets, reports, articles. No matter the shape it takes, data tells a story. Those stories play a powerful role in advocacy through demonstrating the great things people with intellectual and developmental disabilities (IDD) are doing as well as showing where the gaps in supports and services remain. These gaps can become giant caverns in the life of individuals with IDD and keep them from realizing their full potential.

Our advocacy for and with individuals with IDD is at its best when we have concrete data to back it up. That’s why we need your input on our crucial FINDS Survey. In 2010, The Arc and the University of Minnesota’s Research and Training Center on Community Living conducted the Family and Individual Needs for Disability Supports (FINDS) Survey: a groundbreaking and needed examination of the supports that people with IDD receive across the country. The research team received responses from parents, siblings, and other caregivers detailing their perspectives on the supports their clients and loved ones receive in education, employment, community living, and other life-span activities.

The results of this survey, highlighted in a summary report published by The Arc in 2011, revealed that many people with IDD were failing to receive the supports needed to live independent and fulfilled lives. For example, the 2010 data told us that 60% of family caregivers provide 40 or more hours of support per week. This data is used to advocate at the federal and state policy levels for increased funding in in-home supports and respite services.

In an effort to remain informed and responsive to the challenges facing today’s disability community, The Arc and the University of Minnesota are conducting the 2017 FINDS survey. This survey comes at a critical time for many within our community, as current proposals will have an impact on the future of many of the funds and support services that people with IDD currently benefit from. Please help us paint a modern and diverse picture of IDD across America by participating in the 2017 FINDS survey.

The survey seeks caregivers (family or otherwise) living in the US and its Territories aged 18+ who provide frequent, primary support to share their experiences. The deadline to submit a completed survey is April 30. Please click on this link to fill out a survey online, download a copy in English or Spanish, or forward the link to a friend!

Please let me know if you have any questions by emailing me at Lulinski@thearc.org.

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The Arc Calls on Federal Government to Hire More People With Intellectual and Developmental Disabilities

/in /by The Arc

Washington, DC – Yesterday, The Arc submitted comments to the U.S. Equal Employment Opportunity Commission (EEOC) calling on the federal government to become a model employer of people with disabilities, including individuals with intellectual and developmental disabilities (IDD).

“While the last few years have seen some modest increases in the numbers of people with disabilities employed by the federal government, The Arc remains deeply concerned that many people with the most significant disabilities, including jobseekers with intellectual and developmental disabilities, are being left behind,” said Peter V. Berns, Chief Executive Officer of The Arc.

Data obtained by The Arc from the Office of Personnel Management (OPM) reveal that in fiscal year 2012, the federal government employed only 813 non-seasonal, full time permanent employees with intellectual disability (ID), representing 0.044% of all federal employees. Only 28 people, or 3/100ths of one-percent of total new hires, were people with ID. That same year, the federal government employed only 118 part-time employees with ID. Only 17 people with ID were hired as part-time employees, about 9/100ths of one-percent of new hires.

“While we are pleased that the EEOC is moving forward with strengthening federal regulations, the shockingly low rate of federal employment of people with intellectual disability is unacceptable. The Arc calls on the federal government to act immediately to remove barriers to employment for people with disabilities in the federal workforce, establish strong goals for hiring of people with disabilities, including people with intellectual and developmental disabilities, and hold agencies accountable for meeting those goals.

“There is no need for OPM to wait for the EEOC to complete the rulemaking process before it takes action to address this problem. OPM already has authority under existing law and under Executive Order 13548 to take action now,” Berns said.

Issued by President Obama on July 26, 2010, E.O. 13548, titled “Increasing Federal Employment of Individuals with Disabilities,” calls on the Federal Government to hire 100,000 people with disabilities over five years.

“As a first step, OPM should direct federal agencies to update and revise the “agency-specific plans for promoting employment opportunities for individuals with disabilities” required under the Executive Order so that they specifically address employment of people with intellectual and developmental disabilities. There are other steps that can be taken today. The Federal Communications Commission has already embarked on an initiative to hire people with intellectual and developmental disabilities in that agency. Other agencies should get started too.

“Across the United States, The Arc has nearly 700 state and local chapters in 49 states and DC that stand ready to assist the federal government in identifying people with intellectual and developmental disabilities who are ready to work and whose abilities will be an asset to federal agencies. The federal government can and should be a model employer of people with disabilities. The Arc will continue to closely monitor annual reports on the federal employment of people with disabilities to ensure progress and accountability,” said Berns.

The U.S. Bureau of Labor Statistics regularly reports that the percentage of working-age people with disabilities in the labor force is about one-third that of persons with no disability. On average, workers with disabilities face significant gaps in pay and compensation, compared to workers with no disability. Additionally, about one in three employment discrimination charges filed with the EEOC allege discrimination on the basis of disability (often, in combination with charges of other types of discrimination).

The Arc’s own research suggests that the employment picture for people with IDD may be even bleaker. In 2010, The Arc conducted a national online survey, called the FINDS Survey, to obtain perceptions of people with IDD and their families on a range of life-span issues. Over 5,000 people participated. Only 15% of FINDS survey respondents reported that their family member with an intellectual and/or developmental disability was employed.

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The Arc Commends Governor Jack Markell’s New Initiative to Employ Individuals With Disabilities

/in /by The Arc

Washington, DC – This week, Delaware Governor Jack Markell was named Chair of the National Governors Association (NGA). Shortly after his appointment became official, the Governor announced that during his year-long term, his Chair’s initiative will be increasing employment among individuals with disabilities. The Arc fully supports Governor Markell’s efforts and applauds him for his work on behalf of individuals with intellectual and developmental disabilities (IDD) and other disabilities.

“Individuals with intellectual and developmental disabilities are capable of excelling in the workforce and giving back to the communities in which they live. We commend Governor Markell for bringing national attention to the employment challenges facing individuals with disabilities and for working to create employment opportunities for them through innovative public-private partnerships. The Arc has long recognized the need for employment opportunities for individuals with disabilities, and we look forward to supporting the Governor’s initiative,” said Peter Berns, CEO of The Arc.

A major emphasis of the Governor’s initiative will be on people who have significant intellectual and developmental disabilities and may require supports like job coaches and personal attendants in order to live and work in the community. Throughout the year he will convene governors, businesses, disability leaders, and other thought leaders. The initiative will focus on educating public and private sector employers and supporting state governments to join with business partners to develop and build out blueprints to promote the hiring and retention of people with disabilities.

The Department of Labor released statistics in 2011 stating that 17.8 percent of Americans with a disability are employed, compared to 63.6 percent of those with no disability. The Arc’s own research suggests that the employment picture for people with IDD may be even bleaker. In 2010, The Arc conducted and received over 5,000 responses to a national online survey called the Family and Individual Needs for Disability Supports, or FINDS Survey, to obtain perceptions of people with IDD and their families on a range of life-span issues. Only 15% of FINDS survey respondents reported that their family member with IDD was employed.

“The bottom line is that there are so many people with disabilities who have the time, talent and desire to make meaningful contributions to interested employers,” Governor Markell said. “More companies are recognizing that creating greater economic opportunity for these workers improves their own bottom line as well. It doesn’t matter whether you were born with additional challenges to face or – in the case of our wounded veterans for example – acquired them later in life. What matters is what you have to offer.”

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Why FINDS Matters: An Addition to Your Advocacy Toolkit

/in /by Julie Ward

The Arc’s amazing network of advocates has been working tirelessly to ensure that Medicaid does not suffer budget cuts with the “Don’t Cut Our Lifeline Campaign.” From the debt ceiling negotiations earlier this summer to current outreach to Members of Congress to ensure that individuals who rely on Medicaid do not lose essential services, our advocates have been busy this summer!

Hearing personal stories from individuals with intellectual and developmental disabilities (IDD) and their families has helped make Members of Congress stop seeing Medicaid as just another entitlement program and see it as an important lifeline for millions of Americans. While these stories have helped to enlighten elected officials, many still don’t see the true scope of what Medicaid means to families across the country. This is where The Arc’s FINDS (The Family and Individual Needs for Disability Supports) Survey can help.

Have you read the report on The FINDS survey yet? You should. The startling results provide supporting data for the “Don’t Cut Our Lifeline” campaign. With over 5,000 parents, siblings, children, grandparents and relatives of individuals with IDD surveyed, the results can’t be ignored. Most telling was the insight from caregivers about how they provide for the supports for their loved ones with IDD:

  • Fifty-two percent of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program
  • People with severe IDD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild IDD were more likely to have received supports from a family member paid out of personal or family sources (56%), most often the personal income of a parent, family member or other caregiver
  • Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%)

The challenges facing family caregivers also provide support for the “Don’t Cut Our Lifeline” campaign:

  • Overall, 62% report experiencing decreases in services and 32% were waiting for government funded services, most for more than 5 years
  • More than 40% of family caregivers reported the person with IDD had unmet support needs during the last year for running errands or seeing a doctor (48%), managing finances (46%), transportation (45%) and household management (41%)

Many of you are living the reality behind these data points. The survey is a powerful tool you can use to get that point across to Members of Congress or others who can help the millions of families and individuals who depend on Medicaid. Find more information about how the FINDS results support the “Don’t Cut Our Lifeline” campaign.

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Another Perspective on Why FINDS Matters: On the Front Lines

/in /by Leigh Ann Davis

As Project & Information Specialist with The Arc, I get the opportunity to hear from people all over the country on a daily basis about the challenges people with intellectual disabilities and developmental disabilities (IDD) and their families face in their attempt to obtain services and supports for their loved one. For the past 15 years, I have heard from parents, grandparents, siblings, other relatives, friends, professionals and advocates from all walks of life, and the same recurring theme is boiled down into one question: We’ve tried that…NOW WHAT?

These worn-out, desperate individuals have turned everywhere they could think of looking for basic services for their loved one and have either 1) never been able to access them, or 2) the services were recently stopped due to lack of funding. Families often call our office as a last resort, and that’s why we work tirelessly to make sure their voices are heard. In fact, The Arc recently published The FINDS Survey (a report on Family and Individual Needs for Disability Supports) which explains the current challenges families are facing, and gives the individuals with intellectual disabilities and family members themselves the opportunity to share their own dreams and hopes for the future, and clearly state where our nation falls short in providing basic supports and services.

For example, we found that more than 75% of families can’t find afterschool care, non-institutional community services, trained reliable home care providers, summer, residential, respite and other services. This makes it incredibly hard, if not impossible, for families to support their loved one to become as independent as possible in the community. Also of concern, 62% of families report that services are being cut in the community, limiting or eliminating access to community life altogether.

The FINDS Survey validates that although great strides have been made in the areas of education, employment and inclusion in the community, there are still significant ways our country is falling short in providing the tools and resources families need. You can take a stand today! Learn more about The Arc’s call to action in the FINDS report and find out how, together, we can work to achieve better lives for people with intellectual disabilities and their families!

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Why FINDS Matters

/in /by The Arc

On June 14, 2011 at our press conference announcing the release of our report, Still in the Shadows with Their Future Uncertain, The Arc’s long time friend and colleague, Dr. K. Charlie Lakin, offered the following remarks about the importance of this research. Charlie has now moved on from his position at the University of Minnesota to take the helm at the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education’s Office of Special Education and Rehabilitation Services. His comments at the press conference are well worth thinking about, and are as follows:

“Over my 25 or so years of association with The Arc as a member of various boards at the local, state and national level and as Chair of the Research Committee, one overarching idea has been that The Arc should always be a leader in the movement for people with intellectual and developmental disabilities (IDD) – the first and foremost authority on the issues that concern those individuals. And, the first rule of leadership is to always listen carefully to the source of one’s authority. The Arc’s moral authority is derived directly from listening to and reflecting in its actions the will of those in whose name it exists. It is individuals with IDD and their family members who founded The Arc, who currently sustain The Arc and who are the future of The Arc. They are The Arc.

“In that regard, it was important, even essential that The Arc engaged those primary stakeholders in providing the valuable information contained in the FINDS (Family and Individual Needs for Disability Supports) survey and summary report. . . . Advice is sometimes given that if one is not prepared to deal with the answer, then one shouldn’t ask the question. In asking the questions of this survey The Arc has challenged to respond not only in its advocacy, but also in service delivery. The Arc has committed itself to lead by its own example. It will become an organization to which the sizable majority people with developmental disabilities who want real work can turn to obtain real work. It will be an organization to which the majority of people who want support to live in their own homes or in homes with their family members can turn for in-home support. It will commit itself to divesting of the segregated vocational and congregate residential programs operating under its new, progressive logo. And as it has for 60 years it will continue to take the message of people with disabilities and their families to places of power to assure that the promises made to people with disabilities are promises kept.”

I invite you to dig into the data starting first with the FINDS report, Still in the Shadows with Their Future Uncertain, and then into the technical report and data tables if you are so inclined. Consider what it means for you and the people you care about and consider joining the movement or finding out more about what The Arc is doing for people with IDD.

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Families of The Arc Meet With White House on Medicaid Funding as Budget Deal Nears

/in /by The Arc

WASHINGTON, DC – Today, families from West Virginia, Texas, Georgia, and Virginia joined The Arc at a meeting with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President to discuss the impact on people with intellectual and developmental disabilities (IDD) if deep Medicaid cuts are included in a budget deal. As President Obama continues to engage in deficit reduction talks, The Arc, the nation’s largest and oldest human rights organization for people with IDD, and its members are calling on Congress and the White House to keep Medicaid and programs that support those with IDD intact.

Medicaid provides a critical lifeline for people with IDD. It provides assistance with living in the community, respite services, assistance with daily living such as help getting dressed, taking medication, preparing meals, managing money, and getting in and out of bed. Nationwide, state and federal Medicaid together provide over 75% of the funding for these services for people with IDD. Medicaid is also the primary source of health insurance for people with IDD and provides needed health care services such as prescription drugs, dental, physical therapy, speech therapy, prosthetic devices, wheelchairs and other health care services for eligible people. Private insurance is often unavailable or unaffordable for people with IDD due to discrimination in health insurance, high unemployment, and other factors.

“The Arc had the opportunity to touch the hearts and minds of some of the most powerful people in government today, and our message was clear – don’t cut the lifeline for these families. Medicaid is crucial to the health, well-­being, and future of these families, and without it, they would be forced to quit their jobs or sacrifice much of the progress their children have made with support from Medicaid,” said Peter Berns, CEO of The Arc.

About the Keatons of Milton, West Virginia:

Amanda and Greg Keaton are parents of 18-­month-­old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen’s main medical conditions include two severe congenital heart defects -­ Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother’s health insurance before he turned four months old. Graysen’s nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia’s Children with Disabilities Community Services Program.

About the O’Briens of Waycross, Georgia:

Deirdre O’Brien has two children, including her 13-­year-­old daughter, Clare, who has significant intellectual disabilities. Clare also suffers from abdominal migraines, which are similar to traditional migraines but the pain is in the stomach and causes her to vomit continuously for days. Two years ago, Clare’s migraines became very severe, occurring nearly every two weeks. Her hemoglobin dropped severely, she missed a significant amount of school and her parents missed work to take care of her. During this period, the O’Brien family saw no alternative but for Deirdre to quit her job and stay at home in case her daughter became ill. The state of Georgia recognized Clare’s needs and she was granted a small Medicaid home and community based waiver, which allowed Deirdre to hire staff to help care for her daughter.

About the Rodriguezes of Tomball, Texas:

Natalie and Ruben are parents of 31-­year-­old TJ, who was born with significant intellectual and developmental disabilities. TJ needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking,
and preparing his meals. As he has gotten older, TJ’s mobility challenges have greatly increased along with his medical needs. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. In addition, through TJ’s Medicaid Home and Community Services slot, which took nine years to receive, his parents have been able to make modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.

About the Brandts of Springfield, Virginia:

Carrin and Mitchell Brandt are parents of 10-­year-­old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-­tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-­term support needs, such as residential and day support.

The stories these families have shared with the White House dramatically illustrate the findings from the The Arc’s recently released report Family and Individual Needs for Disability Supports (FINDS). The FINDS survey of nearly 5,000 family respondents demonstrates that families across the country have similar experiences. For example:

  • One-­third of parents and caregivers reported that they are on waiting lists for government funded services, with the average wait more than five years.
  • One out of five families report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • Most family caregivers (58%) provide more than 40 hours of care per week (including 40% who provide more than 80 hours of care per week). This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
  • Sixty two percent of caregivers reported a decrease in services for their family member with a disability.

“These statistics came to life at the White House today, as these families exemplify what it means to be on a waiting list for services for nine years, and what life looks like when parents face a choice between working and caring for their loved one,” said Marty Ford, The Arc’s public policy director.

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Groundbreaking FINDS Report Picked up by National Media

/in /by Kristen Bossi

The Arc recently released the results of its groundbreaking Families and Individual Needs for Disability Support (FINDS) survey and media across the country have been covering the startling statistics. A major goal for this project has been to raise awareness of The Arc and the urgent unmet needs of people with intellectual and developmental disabilities (IDD), and the media has responded by reporting findings from the survey to the general public and highlighting the work of local chapters.

We know that while we have come a long way in promoting and protecting the human rights of people with IDD, there is still much more work to be done. Throughout our efforts to bring about greater awareness, two findings from the survey have struck a nerve – one-third of parents and caregivers (potentially 1 million families) reported that they are on waiting lists for government funded services, with the average wait more than five years. And in this recession, 62 percent of caregivers reported a decrease in services for their family member with a disability, leaving them financially vulnerable.

On the morning of June 14, we released Still in the Shadows with Their Future Uncertain, our report on the FINDS data. The Arc’s CEO Peter V. Berns and Lauren Potter, star of the hit FOX show “Glee,” participated in more than twenty television and radio interviews in top media markets across the nation, including Boston and Greensboro, North Carolina. Peter and Lauren shared the findings of the report and talked about what needs to be done to improve the lives of people with IDD. Following these interviews, The Arc hosted a press conference at the National Press Club to officially unveil the report, and the national newswire Reuters quickly ran a story. Throughout the day, media continued to pick up on the report, interviewing local Arc executive directors and self-advocates, like Jamie Liban and Katherine Olson from The Arc of Virginia who did an in-studio interview at WTVR in Richmond.

The FINDS survey continues to have momentum, as Health & Home Report, one of the longest running syndicated video magazines on television, will begin airing on July 1st one of the television interviews with Peter and Lauren. Health & Home Report is hosted by an award winning reporter and anchor, Laura DeAngelis, and has gained a loyal following because of its useful consumer tips and interesting stories. The show is distributed to 20 broadcast stations and 91 cable systems across the country, reaching an audience between 3 to 4 million.

We encourage you to read the FINDS survey report and spread the word about The Arc’s call-to-action to motivate 1 million Americans to join the movement for people with IDD. Use this information to make the case to everyone you know that more needs to be done to help people with IDD be fully included and participate in the community throughout their lifetimes. Build on the publicity generated by media coverage of the report and share this blog with your networks. Thank you!

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New Survey Shows Urgent Unmet Needs for Disability Support

/in /by Kristen Bossi

The Arc recently had the opportunity to measure the urgent, unmet needs of individuals and families living with IDD and find out where our society is succeeding in offering them support and where we’re falling short. In conjunction with researchers at the University of Minnesota, we conducted an unprecedented survey of more than 5000 individuals with IDD, their family members and caregivers covering a host of issues from education to housing to planning for the future and discovered that many with IDD are unnecessarily living in the shadows of society for lack of support to meet their most basic needs.

This week, we released the top findings from that survey in a publication called Still in the Shadows with Their Future Uncertain and outlined the steps we need to take as individuals, as families, as advocates and as a country to address the most pressing needs. Here are just a few of the most dramatic findings from the survey that should inspire us to action.

  • 62% of caregivers report that the level of services for their family member with a mild or moderate disability is decreasing; 70% of families with severe disabilities report a decrease in services.
  • 72% of family respondents provide direct financial support to their family member with disabilities and 52% of families are paying for care out of their own income.
  • More than 80% of families reported not having enough retirement savings for their future as a result of using personal funds to compensate for the lack of services available to their loved one.

We invite you to read the full report available now and join us in our movement through the call to action outlined in the report. Or, find out more about how you can get involved with The Arc to help bring about positive change, offer opportunity and foster hope for people with IDD everywhere.