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.

The Arc Responds to Texas Court of Criminal Appeals Ruling in Bobby Moore Case

Washington, DC – Earlier this week, the Texas Court of Criminal Appeals (CCA) ruled that Bobby Moore did not have intellectual disability and could, therefore, be executed in Texas. The 5-3 CCA decision ignored the request of State prosecutors who—in light of last year’s U.S. Supreme Court ruling in Moore v. Texas—urged the CCA to find that Mr. Moore did meet the criteria for intellectual disability and should therefore have his sentence commuted to life in prison rather than be subject to the death penalty in violation of the Eighth Amendment to the U.S. Constitution prohibiting cruel and unusual punishment. 

“The facts in this case are clear—so much so that prosecutors acknowledged that Mr. Moore met the criteria for intellectual disability following the Supreme Court’s decision—and Mr. Moore should therefore be protected by Supreme Court decisions that ban the execution of persons with intellectual disability as cruel and unusual punishment under the Eighth Amendment.  The Arc will continue fighting for the rights of people with intellectual and developmental disabilities, and in the aftermath of this case we will only increase our legal advocacy efforts to ensure that the Supreme Court’s decisions are upheld and justice is appropriately served,” said Peter Berns, CEO of The Arc.

Last year, the U.S. Supreme Court vacated the CCA’s prior decision finding that Mr. Moore did not meet the criteria for intellectual disability and could be executed based on its use of stereotypical and outdated factors—instead of well-established clinical standards—to determine intellectual disability in death penalty cases. Judge Elsa Alcala who authored the CCA’s dissenting opinion this week, issued a strong rebuke to the majority: “this Court has set forth an unconstitutional standard for intellectual disability that continues to permit consideration of wholly subjective, non-clinical factors and stereotypes…This Court’s approach…is eerily reminiscent of the seven Briseno factors that were held to be unconstitutional by the Supreme Court.”

The Arc of the United States and The Arc of Texas filed an amicus brief with the CCA in support of Mr. Moore, joining a broad range of prominent entities and individuals with diverse perspectives and views on the death penalty who filed briefs urging the CCA to grant relief for Mr. Moore. The Arc’s amicus brief noted that the framework established by the Supreme Court requiring courts to consult clinical standards in making intellectual disability determinations in death penalty cases laid a sound foundation for the CCA to determine that Mr. Moore meets the criteria for intellectual disability and cannot be executed.

In her dissent, Judge Alcala cited The Arc’s amicus brief, noting that it “correctly observe[s] that ‘there is a wide gap between the clinical definition and expectations that many laypeople have about intellectual disability…these ‘common misimpressions include beliefs that people with intellectual disability are essentially identical to one another and that all are incapable of any but the most rudimentary tasks.’”

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. Most recently, in Moore v. Texas (2017), the Court rejected Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.”
The Arc has deep sympathy for the family and friends of the victim in this case, and we supported appropriate punishment of all responsible parties. The Arc did not seek to eliminate punishment of Mr. Moore or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

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 nearly 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.

The Arc Responds to Latest Attacks on the Affordable Care Act

“Another example of the Trump Administration’s intent to undermine access to health insurance for millions of people with disabilities”

Washington, DC – Yesterday, the U.S. Department of Justice announced that it will refuse to defend the Affordable Care Act (ACA) in a lawsuit brought challenging the constitutionality of the law by the state of Texas. In a legal filing, administration officials said that key parts of the Affordable Care Act should be invalidated. 

 “The actions of the Department of Justice are another example of the Trump Administration’s intent to undermine access to health insurance for millions of people with disabilities by dismantling the Affordable Care Act.  It exposes the Administration’s intent to eliminate critical protections for people with pre-existing conditions who benefit from provisions in the law that assure access to affordable health insurance.

“The ongoing attempts to dismantle this law highlight a disturbing disregard, by the Trump Administration, for the needs of people with disabilities who rely on the Affordable Care Act for their health and wellbeing. The Arc remains steadfast in our commitment to advocate and protect this law and the benefits it provides for people with intellectual and developmental disabilities,” said Peter V. Berns, CEO of The Arc. 

The Department of Justice is responding to a lawsuit filed by the state of Texas and several other states in federal district court in February 2018 seeking to invalidate the ACA as unconstitutional in light of the passage of the Tax Cuts and Jobs Act of 2017. While the Administration’s response did not go as far as the claims in the Texas lawsuit, it is a rare response for the Department of Justice to not defend an existing law.

 The Arc submitted a declaration in support of a Motion to Intervene in Texas v. United States filed by California Attorney General Xavier Becerra and joined by 16 other attorneys general. The State of California and 16 other states seek to enter the lawsuit to defend the ACA. In its declaration, The Arc noted that it views the ACA “as critical for people with I/DD and their families in providing benefits, supports, and civil rights protections that help make community living possible.”

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 nearly 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.