Letter to House Agriculture Committee on the 2024 Farm Bill

/in /by Darcy Milburn

May 23, 2024

The Honorable Glenn “GT” Thompson
Chairman
House Committee on Agriculture
400 Cannon House Office Building
Washington, DC 20515

The Honorable David Scott
Ranking Member
House Committee on Agriculture
468 Cannon House Office Building
Washington, DC 20515

Dear Chairman Thompson and Ranking Member Scott,

We write to express strong concern with the proposed changes to future Thrifty Food Plan (TFP) benefit adjustments outlined in the Farm, Food, and National Security Act of 2024: Discussion Draft (House Farm Bill). This proposal would block Supplemental Nutrition Assistance Program (SNAP) benefits from keeping pace with the cost of a healthy, realistic diet, which the Congressional Budget Office projects would cut benefits by almost $30 billion over the next 10 years. If enacted, this would be the largest cut to SNAP in almost 30 years, and these cuts would grow much deeper over time. Every SNAP participant would receive less to buy groceries in the future than they would under current law. This represents a serious threat to the health of nearly 14 million people with disabilities who rely on SNAP to put food on the table.

The Arc is the largest national community-based organization advocating for people with intellectual and/or developmental disabilities (IDD) and their families. Our nearly 600 state and local chapters across the United States provide a wide range of services for people with IDD, including individual and systems advocacy, public education, family support, systems navigation, support coordination services, employment, housing, support groups, and recreation.

In the United States, all too often food insecurity and disability go together. Families that include people with disabilities are two to three times more likely to experience food insecurity than families that have no members with disabilities. Similarly, people experiencing food insecurity have increased likelihood of chronic illness and disability.

By increasing access to adequate, nutritious food, SNAP plays a key role in reducing hunger and helping people with disabilities to maximize their health and participate in their communities. SNAP benefits have served as an important lifeline as the price of food has skyrocketed in recent years, but benefit levels have fallen short of meeting many peoples’ needs. From 2019 to 2023, the all-food Consumer Price Index (CPI) rose by 25 percent. As a member of our network from Minnesota wrote, “As a disabled person who is unable to work and gets the maximum amount of benefits I’m entitled to through the program, I still struggle to feed myself and rely on the food shelf and other charities to make sure I don’t go hungry. Cutting it would be devastating to my ability to feed myself.”

Inflation is not the only factor that influences the cost of a healthy diet. Beyond inflation, people with disabilities face additional food affordability challenges because many have allergies, food sensitivities, or other health conditions that require a specialized diet and higher grocery bills. For example, we recently received a message from a parent in Texas who emphasized the importance of SNAP benefits for her family when she wrote, “My daughter has a life-threatening syndrome related to a slow metabolism requiring her to have a low-[calorie], low fat, overall very healthy diet. These foods often cost more. … We daily are working towards long term solutions to keep her safe and healthy when we are someday gone. Losing SNAP benefits would set us back completely.”

The U.S. Department of Agriculture (USDA)’s 2021 update to the TFP resulted in modest but overdue improvements to SNAP benefits that have enabled people with disabilities to afford more of the foods they need. For example, the inclusion of some easier-to-prepare foods such as canned beans and pre-cut foods in the 2021 TFP helped make SNAP benefit levels better reflect the reality of what beneficiaries—especially those with mobility and/or manual dexterity challenges—actually buy.

The proposal in the House Farm Bill to freeze the cost of the TFP outside of inflation adjustments, even if nutrition guidelines or other factors change the cost of an adequate diet, would erode benefits over time and have a disproportionate impact on people with disabilities. We urge you not to advance this proposal and to work on a bipartisan basis to strengthen and protect SNAP.

Sincerely,

Darcy Milburn
Director, Social Security and Healthcare Policy
The Arc of the United States

City of Grants Pass, Oregon v. Johnson

/in , , , , , , , /by The Arc

Filed: April 3, 2024

Court: U.S. Supreme Court

Overview: Amicus brief alongside other disability rights organizations arguing that the Eighth Amendment ban on cruel and unusual punishment prohibits cities from criminalizing conduct associated with being unhoused.

Excerpt: “People with disabilities face unique challenges and deep-rooted stigmas that increase their risk for homelessness. Less than 5% of housing in the United States is accessible for moderate mobility disabilities, and less than 1% is accessible for wheelchair use. Housing costs are prohibitive for many disabled people who rely on public assistance for basic costs of living—the average cost of a one-bedroom apartment in the United States exceeds the maximum monthly Supplemental Security Income a person can receive. Moreover, widespread housing discrimination on the basis of disability further compounds the risk of homelessness. The Ordinances’ impact on homeless people with disabilities highlights how grossly out of proportion the punishments they impose are to the severity of the offense. Simply put, criminalizing the involuntary conduct of being a homeless person without a place to sleep—in a city with no public shelters—is anathema to the decency standards of any civilized society.”

Case Documents:

Press Releases:

Robertson v. District of Columbia

/in , , , , /by The Arc

Filed: 2024

Court: U.S. District Court for the District of Columbia

Plaintiffs: Parents and guardians of students with disabilities in the District and The Arc

Counsel: The Arc, Washington Lawyers’ Committee for Civil Rights and Urban Affairs, Children’s Law Center, McDermott Will & Emery

Overview: Parents and guardians of children with disabilities living in D.C., along with The Arc of the United States, filed a class action lawsuit against D.C.’s Office of the State Superintendent for Education for failing to provide safe, reliable and effective transportation to and from schools for children with disabilities, thereby denying students equal access to their education and unnecessarily segregating them from their peers.

Case Documents:

Press Releases:

Related Media:

Storytelling Toolkit for People With Disabilities and Advocates

/in , , , /by The Arc

Your life and experiences are powerful and valuable. Sharing your story can change people’s hearts and minds.

This toolkit will help you create and share your stories to raise awareness about an issue, encourage elected officials to change laws or policies, ask people to support changes you want to make in your life, and share about what your life is like.

Download the resources below to get started!

Introduction to The Arc@School Advocacy Curriculum in Spanish

/in , , , , /by The Arc

These recorded webinars provide a brief overview of the Spanish version of The Arc@School’s Special Education Advocacy Curriculum. The curriculum provides basic information that parents, educators, and non-attorney advocates need to support students and families in navigating the special education system. Watch the webinar to learn more about the content of the curriculum, how to sign up to receive an account, what to expect after signing up, and more.

IN ENGLISH:

IN SPANISH:

Talk About Sexual Violence: Phase Three Final Report

/in , , , , , , /by The Arc

Transforming Health Care to Address and Prevent Sexual Violence of People With Intellectual and Developmental Disabilities: Final Report 

Health care providers hold vital positions in the growing national movement to address sexual assault. The overarching goals of the multi-year Talk About Sexual Violence (TASV) project were to raise the alarm about this silent epidemic, promote trauma-informed practices in health care, and compel action to prevent sexual trauma suffered in communities across the country.

This comprehensive summary report provides key findings, innovative solutions, and a call to action from survivors with disabilities, health care professionals, and other advocates.

This final report is provided both in a written format and as a video.

Comments on the HHS Proposed Rule Implementing Section 504

/in , , , , /by Darcy Milburn

November 13, 2023

Melanie Fontes Rainer, Director
Office of Civil Rights
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Re: Notice of Proposed Rulemaking on Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. Docket No: 2023-19149, RIN: 0945-AA15

Dear Director Fontes Rainer:

The Arc of the United States (The Arc) appreciates the opportunity to comment on and express our strong support for the proposed rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. The Arc is the largest national community-based organization advocating for people with intellectual and/or developmental disabilities (IDD) and their families. The Arc promotes and protects the human rights of people with IDD and actively supports their full inclusion and participation in the community throughout their lifetimes. The organization has long advocated that people with IDD must not experience disability-related discrimination in decisions to provide, delay, deny, or limit health care interventions or treatments. Our nearly 600 state and local chapters across the United States provide a wide range of services for people with IDD, including individual and systems advocacy, public education, family support, systems navigation, support coordination services, employment, housing, support groups, and recreation.

The Arc commends the Department of Health and Human Services (the Department) and the Office of Civil Rights for this proposed rule which updates, clarifies, and strengthens the implementing regulation for Section 504 of the Rehabilitation Act of 1973 (Section 504), the statute that prohibits discrimination against otherwise qualified individuals on the basis of disability in programs and activities that receive Federal financial assistance or are conducted by a Federal agency.

The Arc appreciates that the proposed rule establishes additional protections to ensure that an individual’s health and wellbeing are the only justifiable basis for making medical decisions. People with disabilities experience greater health disparities and barriers to quality health care compared to people without disabilities. This is especially true for people with IDD, who are systematically underserved by our healthcare system. Research suggests that although individuals with IDD are disproportionately high utilizers of healthcare services, they receive poorer quality of care, report poor experiences at hospitals, are less likely to receive preventative screenings and vaccinations, have poorer health outcomes, and shorter life expectancies. People with IDD experience higher rates of preventable health conditions and poorly-managed chronic conditions including, but not limited to: poor dental health, undiagnosed hearing and vision impairments, arthritis, obesity, diabetes, high blood pressure, and cardiovascular disease. Research shows people with IDD also lack access to adequate OB/GYN services – especially providers well-versed in using supported decision-making. For example, people with IDD have much lower rates of routine breast and cervical cancer screenings, higher breast cancer mortality rates, higher rates of medical complications during pregnancy, and higher rates of postpartum hospital admissions.

While there are many contributing factors to these disparities, discrimination and the stigma, exclusion, and devaluing the equal worth of people with IDD are critical problems faced by people with IDD. People with IDD and their family members frequently experience or observe discrimination from health care providers. They report that medical providers do not want to provide services to people with IDD, that they treat them differently, that they wrongly attribute health care issues to the fact that they have IDD, that appropriate treatment is not necessary due to their IDD, that they cannot see individuals with IDD because they do not have the expertise, and that they do not view people with IDD as reliable communicators of health issues. Many medical providers are not familiar with the support needs of individuals with IDD, refuse to allow a support person to accompany a patient with IDD during a procedure, and lack training in how to interact with someone using Alternative and Augmentative Communication (AAC) tools.

The most frequent concern expressed is that many people with IDD rely on Medicaid, which they access due to their disability, and many providers do not accept Medicaid. For example, many individuals with IDD and their families report significant challenges finding a dentist in their area that accepts Medicaid. While addressing that issue and others may be beyond the scope of the rulemaking, it remains an important concern regarding disability discrimination.

Another significant area of concern is that many mental health providers decline to treat people with IDD. More than a third of people with IDD have a co-occurring mental health condition, but they often experience barriers to accessing appropriate mental health services. This includes several assumptions that people with IDD cannot benefit from mental health services, that nonverbal individuals cannot participate in therapy, that multiple medications are needed to control the behavior of some people with IDD, and that mental health professionals do not have the competency to serve people with IDD. Many individuals with IDD are also improperly prescribed medications for mental health conditions despite not having any psychiatric diagnosis.

As above, fully addressing these complex issues may be beyond the scope of this rulemaking and complicate the issue of fully identifying discriminatory actions versus other complexities in the health care system. The addition of other examples in the rulemaking may be helpful to recipients for identifying where they need to modify their policies or practices and better understand the anti-discrimination provisions.

While our comments do not specifically address the section on medical equipment accessibility, we frequently hear about physical access challenges from our networks. For example, people with IDD, their families, and supporters report that:

  • Bathrooms within medical facilities often do not have automatically opening doors, adequate space to accommodate a wheelchair, or height-adjustable universal changing tables in family restrooms. Dental offices appear especially prone to inaccessible restrooms.
  • Waiting rooms often do not have accessible seating for individuals with chronic pain or obesity. Crowds, harsh lighting, and noise in waiting rooms can also pose challenges for individuals with autism who have sensory processing challenges.
  • Examination rooms frequently are too small to accommodate a wheelchair.
  • Physician offices often lack adequate patient transfer or lifting equipment such as Hoyer lifts. Patients often wait for extended periods of time for transfers, and some medical staff have limited knowledge on how to correctly use the equipment.
  • Medical equipment that people with IDD and their families frequently cite as inaccessible include: examination tables, dental chairs, eye examination equipment, scales, X-ray machines, mammography equipment, and other radiography equipment.
  • Parking lots at medical facilities frequently have too few accessible parking spots, especially van-accessible parking spots.
  • Many medical offices do not have automatically opening doors within buildings.
  • At-home diagnostic, therapeutic, and monitoring equipment such as heart monitors are also frequently inaccessible.

In addition, the Arc supports the Consortium for Constituents with Disabilities (CCD)’s recommendations that HHS, in collaboration with the Access Board, develop and issue standards for individuals with non-mobility disabilities, including sensory disabilities, intellectual and developmental disabilities, and individuals with multiple disabilities. For example, the introduced bipartisan Medical Device Nonvisual Accessibility Act (H.R. 1328) requires covered devices to meet nonvisual accessibility standards. If passed, HHS should incorporate similar requirements into 504 regulations. Although qualified individuals with any type of disability must be offered equal opportunity to access medical programs and services, regulated entities would benefit from specific technical guidance on how to fulfill their obligations and make their services accessible.

The proposed updated rules are necessary to ensure that people with IDD and other disabilities are not valued less than others; that children, parents, caregivers, foster parents, and prospective parents with disabilities do not face discrimination in a range of settings; and that websites, kiosks and mobile apps, weight scales, and exam tables used in medical settings are accessible to all patients.

The Arc also endorses the comprehensive comments submitted by CCD. The following comments will emphasize key points for people with IDD and provide additional examples where appropriate. Several of these examples were provided by people with IDD and their families though a communication we shared with our networks about the proposed rule in October 2023.

See continued comments at the resource link, below: 

Restrained and Secluded: How a Change in Perspective for Students With Disabilities and Simple Science Can Change Everything

/in , , , , , /by The Arc

Students with disabilities are more likely to be restrained, secluded, suspended, expelled, and subjected to corporal punishment. In the name of behavior, children with disabilities, Black and brown children, and children with a trauma history are often misunderstood. Outdated behavioral management approaches are not working for the children who need our help the most. Being the parent or caregiver of a misunderstood child can be difficult. We are often blamed and shamed, but there is hope. A bit of neuroscience and a new lens on behavior can reduce and eliminate punitive practices and lead to endless potential.

Speaker Bio: Guy Stephens lives in Southern Maryland with his wife and two amazing children. He is the founder and Executive Director of the nonprofit Alliance Against Seclusion and Restraint (AASR). AASR is a community of over 25,000 parents, self-advocates, teachers, school administrators, paraprofessionals, attorneys, related service providers, and others working together to influence change in supporting children whose behaviors are often misunderstood. He has presented at conferences and events across North America and guest lectures for undergraduate and graduate courses as a national expert on the issue of restraint and seclusion.

Download presentation here.

Download transcript here.

For further questions, please email school@thearc.org.

2023 Talk About Sexual Violence Final Report: Transforming Health Care to Address Sexual Violence of People With IDD

/in , , , , , , /by The Arc

In this video, Leigh Anne McKingsley, Senior Director of The Arc’s National Center on Criminal Justice and Disability, and Kecia Weller, Survivor Self-Advocate and Project Advisor, provide an overview of the key findings and recommendations of the Talk About Sexual Violence project over the past seven years.

FINDS Community Report 2023: Family & Individual Needs for Disability Supports

/in , , , , , , /by The Arc

The Family and Individual Needs for Disability Supports (FINDS) survey provides insights and understanding of the experiences of families supporting a family member with intellectual and developmental disabilities (IDD). It is critical research to inform better policy development.

The FINDS survey was initially conducted by The Arc of the United States in 2010. It was updated in 2017 through a collaboration between the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc.

The 2023 report focused on:

  1. What are the challenges families face in meeting the support needs of their family members?
  2. What are the economic implications of caregiving?
  3. How does caregiving affect caregivers, and what supports do they need?

A better understanding of the experiences and needs of caregivers can help policymakers and others support caregivers in this critical role.