New Data Reveals Our Nation is Failing to Support People with Intellectual and Developmental Disabilities

Washington, DC – The Arc of the United States released the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017today. 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 (I/DD). 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 I/DD 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 I/DD 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 I/DD.
  • 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 I/DD 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 I/DD 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 I/DD 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 I/DD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with I/DD 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 I/DD 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 (I/DD), 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 I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

How The Family and Medical Leave Act Saved My Family

This is a new series at The Arc Blog called #HandsOff. Each month, we will feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Debbi Harris

As we celebrate the 25th anniversary of the Family and Medical Leave Act (FMLA), I am compelled to reflect on the early and difficult birth of our son, Joshua, and the challenges that my family and I faced in securing the leave we needed to care for him. The FMLA allows covered employees to take up to 12 weeks of unpaid leave for certain family and medical reasons, generally with a guarantee to keep their job and benefits afterward. This Act has been invaluable for many people with disabilities and their families – and as you’ll learn from my story, its protections can sometimes mean the difference between the life and death of a loved one.

Josh and Debbi

Josh and Debbi
Photo by Jerry Smith

Josh was born in January of 1993, about 8 weeks before he was due. Complications immediately prior to and during labor led to an emergency C-section. With my husband Victor by my side, we learned upon his delivery that Josh had experienced a grade IV brain hemorrhage in utero, and had suffered from anoxia and hydrocephalus at birth as a result. The next few months in the NICU became a rollercoaster of medical ups and downs, as doctors tried to stabilize Joshua’s initial condition, while, at the same time, treat the morbidities that come with prematurity, along with the unanticipated medical effects of what would later emerge as Joshua’s disabilities.

At the time, I was working full-time as a technical writer and Victor was a full-time applications developer, under contract. We didn’t qualify for any financial supports and were unfamiliar with programs like Medicaid – but we were able to rely on the private insurance I received through my employer to provide Josh’s life-sustaining medical care. We also already had two children at home, making it imperative that both of us remain in our jobs to earn enough to support them, as well.

In the first year of his life, Josh had 10 surgeries and as many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. Victor and I tried our best to juggle our jobs with daycare, Kindergarten, and Victor’s duties in the U.S. Marine Corps Reserve, all while bearing the anxiety and sadness of watching our youngest son go through this terrible ordeal. We spent countless days and nights at the hospital, often bringing our other boys along and letting them play with their toys underneath the giant metal PICU crib that held their little brother.

Despite the new stresses in our lives, I was determined to make up for any lost time at work and to meet my professional obligations. I never missed a deadline, even if that meant reporting to the office late at night and staying until the early hours of morning. It was exceedingly difficult. Still, my supervisors lacked compassion for our situation, and I feared what the loss of my job would mean for Josh – if we were to lose the health insurance that was, in those very moments, sustaining his life.

Fortunately, about a month after Josh was born – February 5, 1993 – the FMLA had become law. With the pressures at work mounting, and Joshua’s medical outcomes becoming less clear, I knew the FMLA would be my family’s last recourse to getting the time we needed to support our son.

At the time, the FMLA was new and awareness about the law was often low, including at my company. As I began to explore how to request time off through the FMLA, it became apparent very quickly that I would receive little to no support from my corporation in my decision. Even more shocking, my boss and some of my colleagues were openly critical of my need to take that time, implying that my son’s condition would simply create a lasting burden for the organization. Lack of knowledge created unwarranted fears and tension. My hope was only to have the time and resources to keep my son alive, and to give him the opportunity to thrive. Our family’s experience with Josh was a clear example of the need for the law.

Thankfully, I was ultimately able to use FMLA leave – but only after being required by my employer to first use up all of my vacation, sick time, and long- and short-term disability. Afterwards, when Josh was perhaps a year old the FMLA protected me from losing my job and our health insurance, meaning that Josh could continue to receive his vital medical care.

Josh’s needs were still critical when he first came home from the hospital at almost four months old. He was technology-dependent, needed constant skilled nursing assessment, and was discharged on ‘in lieu of hospitalization’ status. While he was prescribed home care nursing, it was difficult to find consistent, trained home care nurses, which forced me to decrease my hours to half-time and, ultimately, to work from home two days a week. After a trying period, my husband secured a job that provided us with benefits and enough income to support our family, which allowed me to resign from my job to care of our children full-time.

Without the protections offered by the FMLA, I cannot say whether Josh would still be with us – which is why I am grateful for the protections it offered us and why I will continue to speak out in support of its policies. As I reflect on our experience in fighting for leave in the months and years after Josh’s birth, I cannot help but think of how different our situation would have been if we were allowed paid family leave. The FMLA gives families like ours a chance to take care of their loved ones without bearing the repercussions of losing out on employment or health insurance. As the FMLA enters its 25th year, I believe that the next step – paid leave – should be a protected right of all working individuals.

The Arc Celebrates Law Enacted to Support Family Caregivers

Washington, DC – The Arc released the following statement in response to the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act being signed into law by President Trump.

“Most people with intellectual and developmental disabilities (I/DD) in our nation live with family caregivers, and nearly 900,000 of these family caregivers are over the age of 60.  For many individuals with I/DD, their caregivers mean a life in the community with their family and friends. Without support for these caregivers, individuals with I/DD could face seclusion in institutional settings.

“These caregivers are providing invaluable assistance with meals, transportation, personal hygiene, money management, and any other support needed. Even families that are fortunate enough to have formal long term supports and services in place for their loved ones – overwhelmingly funded through Medicaid – often maintain lifelong caregiving responsibilities. The demands of caregiving can be enormous, particularly for aging caregivers, which is why this law is so meaningful to The Arc’s community.

“We thank the law’s champions, Senator Collins, Senator Baldwin, Representative Harper, and Representative Castor, for ensuring the development of a national strategy to support our family caregivers. Each vote for this bill was a vote to support caregivers so that they can continue in their critical roles in supporting their loved ones. The bipartisan support of this bill is a heartening reminder that Members of Congress can successfully work across the aisle to support the needs of their constituents with disabilities. Disability rights are human rights and the overwhelming support of this new law should be celebrated by individuals with disabilities and their families nationwide,” said Peter Berns, CEO of The Arc

This legislation directs the Department of Health and Human Services to develop, maintain, and periodically update a National Family Caregiving Strategy, a recommendation of the national Commission on Long-Term Care. The Department is also charged with convening a Family Caregiving Advisory Council for the joint development of the strategy. Elements of the strategy are to include recommended actions that Federal State, and local governments and other entities may take to promote person and family-centered care, family involvement in assessment and service planning, information sharing and care coordination with service providers, respite options, financial security and workplace issues, and efficient service delivery.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), 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 I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Stories make us stronger: Please share yours through the 2017 FINDS survey

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 (I/DD) 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 I/DD and keep them from realizing their full potential.

Our advocacy for and with individuals with I/DD 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 I/DD 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 I/DD 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 I/DD currently benefit from. Please help us paint a modern and diverse picture of I/DD 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.