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Passage of AHCA: Real Life Consequences for People With Disabilities

/in /by The Arc

By: Julie Ward, Director of Health Policy and Nicole Jorwic, Director of Rights Policy

They say that if you want to know about a person, look at how they spend their money; to know the values of a nation, the same is true. The current Affordable Care Act and Medicaid fight is showing a side of the political system that is disheartening and shameful. The American Health Care Act, passed by the U. S. House of Representatives, lowers taxes on wealthy individuals and corporations and pays for it by taking over $800 billion from the Medicaid program which serves low income children, seniors, people with disabilities, parents, and other adults.

The fundamental injustice of transferring wealth from low income people to businesses and wealthy people is compounded by the fact that these deep cuts in Medicaid will not make private health insurance more affordable or available, the stated goals of supporters of the AHCA. Instead the AHCA dismantles the main source of funding for long term supports and services (LTSS) for seniors and people with disabilities. The demand for these services, such as help to stay in a person’s own home, will grow as the population ages. Instead of addressing the need for an LTSS policy in a positive way, it makes devastating cuts and places a per capita cap on the Medicaid program.

An estimated 24 million people will lose their insurance coverage and millions are at risk of losing the supports and services that help them live in the community. Every one of those numbers represents a person. A person who will no longer be able to feel the peace of mind of health coverage, a person who now will worry that their guarantee to services under Medicaid is irreparably changed, a person whose supports to assist them to work are at risk, and a person who now has to fear that their son or daughter will end up in an institution, when they have fought their whole lives to keep him/her in the community.

Medicaid is the main source of funding for over 77% of the supports and services that individuals with intellectual and/or developmental disabilities (I/DD) use to live in the community and has been able to grow because of the widespread bipartisan support. They have had bipartisan support because disability knows no political, or geographical, ethnic, or socioeconomic boundaries. These supports and services provide dignity to people with I/DD by providing help with meals, bathing and dressing, toileting, in-home skilled nursing, and communication support, to name but a few. These supports are critical to people with disabilities to be able to live their lives in the community. In many cases, they can be the difference between life and death.

We fear that because home and community based services are not mandatory services, they will be cut first. States will return to outdated modes of serving people with disabilities, congregating large numbers of individuals in facilities with inadequate staffing and no real-life opportunities. The per capita cap proposal will pave a path backwards to institutional care and segregated services.

The AHCA has many other troubling provisions and The Arc has developed a summary of how the bill impacts people with disabilities.

As the Senate develops its health care reform proposals, we must be constant reminders that the services and supports to people with disabilities and their families CANNOT be what pays for health care reform and tax cuts. Lives depend on it.

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“Don’t Take Away Our Independence”: Watch Thelma as The Arc Denounces Massive Cut to Medicaid

/in /by The Arc

WASHINGTON, DC – Today, The Arc released a video which highlights how the House-passed cut to Medicaid funding (which exceeds $800 billion) will negatively impact people with disabilities’ capacity to live independently. The video features a conversation with Thelma, a long-time Washington, DC resident who relies on Medicaid to employ a health aid who helps her perform daily household tasks that she can no longer perform by herself. She, like many others in the disability community, fears that reduced federal funding for Medicaid will limit her ability to hire attendants or access other services she needs to live independently, in the community in which she has lived since her youth.

The video comes on the heels of the House of Representatives passing the American Health Care Act, which included over $800 billion in cuts over 10 years to federal funding for Medicaid programs. This cut would not only force states to cut eligibility for state Medicaid programs, but will also diminish the quality and quantity of services that are provided to people who are already enrolled in these programs. For many people with intellectual and developmental disabilities, Medicaid generally is the only source of funds for them to live and work in the community with friends and families and avoid costly, harmful, and segregated institutions.

“Thelma is part of her community because of Medicaid. And her community is Washington, DC, right in the backyard of where Congress is considering dismantling the program that provides services and supports to Thelma and millions of other people across the country. Every member of the U.S. Senate needs to hear Thelma’s plea, and listen to the thousands of people they represent who have a disability, or have a family member with a disability, or provide services. This is about peoples’ lives – nearly a trillion dollars in cuts will drastically impact the ability of people with disabilities to be a part of their communities. It is unacceptable and The Arc and our network won’t stand for it,” said Marty Ford, Senior Executive Officer, The Arc.

This video is the third in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the Affordable Care Act (ACA) and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration. The second video illustrates how Congress’ proposed changes to the ACA and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

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.

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The Arc Video Offers Disability and Family Perspective on Looming Healthcare Reforms

/in /by The Arc

Washington, DC – Today, The Arc is releasing another video illustrating how Congress’ proposed changes to the Affordable Care Act (ACA) and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

This family’s story is shared by thousands of families across the country who are imploring Congress to keep the ACA and leave Medicaid untouched to allow their loved ones to continue to receive the supports they need to live full and independent lives. Here are some of the key ways in which the passage of the American Health Care Act (AHCA) will impact Toby, Lindsay and Calvin, and others in the intellectual and developmental disability community:

  • Proposes a more than $800 billion cut to Medicaid over the next decade, the program which provides funding for essential services for people with intellectual and developmental disabilities to live independent and healthy lives;
  • Allows for insurance companies to discriminate against people with disabilities by using pre-existing conditions as a pretext for higher and often unaffordable health care premiums;
  • Places more pressure on states to support an already under-funded program, which will result in smaller budgets, less coverage and fewer services for people with intellectual and developmental disabilities.

“The Arc opposes the AHCA and the proposed changes to the bill, as both will have widespread and terrible consequences for people with intellectual and developmental disabilities and their families. Congress needs to realize that a vote for the proposed health care reform is a vote against the health and wellbeing of their constituents, which include people with disabilities,” said Marty Ford, Senior Executive Officer, The Arc.

This video is the second in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the ACA and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration.

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.

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The Arc on CBO Score of American Health Care Act

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the Congressional Budget Office’s report on the American Health Care Act, the plan to repeal the Affordable Care Act:

“The numbers are in, and they are devastating for people with intellectual and developmental disabilities. The Congressional Budget Office’s (CBO) score of the American Health Care Act confirms what we already knew – this bill is dangerous and the price we will pay is the health of millions of Americans including those with disabilities. We were promised a replacement for the Affordable Care Act, yet the plan laid out by this bill is insufficient to keep people with disabilities insured or support anyone with complex medical needs. The numbers underscore how dire the situation is, estimating that by next year 14 million more Americans would be uninsured and by 2026, 24 million will be without insurance.

“This bill is paid for by permanently altering the federal/state partnership of Medicaid, the primary health insurance program for people with disabilities. Thanks to the Medicaid expansion under the Affordable Care Act, millions of people, including people with disabilities, their family members, and their support professionals, have gained access to health coverage. Medicaid also is the single largest source of funding for the long term supports and services people with disabilities depend on to live and work in the community, and to avoid even more costly institutional care.

“The American Health Care Act will undo all of that by cutting $880 billion from Medicaid in the next decade, leading to 14 million fewer individuals being covered by Medicaid by 2026. Lives have been saved because people have had access to affordable, comprehensive health coverage, including long term supports and services. It isn’t hard to imagine what the outcome

will be as this program is cut and restructured. CBO anticipated that, in response to changes made by the bill, states could ‘cut payments to health care providers and health plans, eliminate optional services, restrict eligibility for enrollment, or (to the extent feasible) change the way services are delivered to save costs.’ Supporters of this bill are putting the health, wellbeing, and freedom of their constituents with disabilities at risk.

“This bill shows complete disregard for the health of people with disabilities. Claims that this bill makes health insurance more affordable are simply untrue. Look at the numbers, they show the reality of what this legislation will do,” said Peter Berns, CEO of The Arc.

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.

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The Arc on House Health Care Bill: “Medicaid Will Be Decimated”

/in , , /by The Arc

Washington, DC – The Arc released the following statement on the draft legislation that repeals the Affordable Care Act (ACA) and pays for it by decimating Medicaid, a program critical to the lives of people with intellectual and developmental disabilities:

“This legislation ends Medicaid as we know it. If it is enacted, Medicaid will no longer be a state and federal partnership – the federal government will cap what it provides, leaving the states to pick up the pieces. It will have a dire impact on the lives of people with intellectual and developmental disabilities who rely on Medicaid and the Affordable Care Act for their health care, community supports, and as a way to live independently in their communities.

“Thanks to the Medicaid expansion under the Affordable Care Act, millions of people, including people with disabilities, their family members, and their support professionals, have gained access to health coverage. Lives have been saved because people have had access to affordable, comprehensive health coverage. The tax credits and changes to health savings accounts proposed in this bill are not adequate to meet needs of people with intellectual and developmental disabilities or those with chronic health conditions. And we have no idea how much this approach will cost, or how many people will lose coverage as Congress is rushing this bill through before the budget experts can do the math on the price tag in dollars and impact on lives.

“The bottom line is that under this legislation, Medicaid will be decimated. People will lose vital benefits and services that support their basic human right to a life in the community. It will turn back the clock on the progress we have made as a society over the last 65 years. It’s morally reprehensible, and our nation cannot let this happen,” said Peter Berns, CEO of The Arc.

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.

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New Project Announcement: The Arc’s National Center on Criminal Justice and Disabilities® and The Board Resource Center

/in /by The Arc

Building Capacity of Primary Care Providers to Discuss Sexual Violence with Women with Intellectual/Developmental Disabilities

Introduction

In September of this year, The Arc’s National Center on Criminal Justice and Disability® (NCCJD) was awarded a one-year grant from The Special Hope Foundation. Working with The Board Resource Center, a California-based consulting firm, this funding will be used to teach health care professionals about how to address and help prevent sexual violence against women with intellectual/ developmental disabilities (I/DD).

Background

This project will address the alarmingly high rate of sexual violence experienced by women with I/DD. About 20% of all women are sexually abused each year. However, women and girls with developmental disabilities are four to ten times more likely to face sexual abuse. Up to 68% of women with developmental disabilities will be abused before they are 18, and up to 90% will experience abuse during their lives (Valenti-Hein, D. & Schwartz, L. 1995).

Health care providers are in a unique position to have open dialogue about sexual violence prevention with their female patients. However, many times they do not have experience talking about victimization with women with I/DD in a manner that is accessible and culturally competent for all. In order for providers to have meaningful conversations about the high risk of violence people with I/DD face, they need training on effective ways to provide patients with safe environments to share their experiences, often for the first time.

By learning how to use effective plain language communication strategies, they can provide a safe place for women to share openly. These strategies can improve communication with all patients, since plain language strategies apply to a number of different populations who struggle with comprehension of information. Ultimately, this project will improve health care delivery by giving providers effective tools to support women with I/DD to discuss or disclose sexual violence.

Project Objectives

This project, funded by The Special Hope Foundation, builds the capacity of primary care providers to discuss the high risk of sexual violence women with I/DD face. It will equip providers with training and tools to create safe, open, and accessible conversations about what sexual violence is and what women can do to report it or stop it from happening. Together, and under the guidance of an advisory committee, we will achieve the following objectives to decrease the incidence of sexual violence: 1) Develop two training videos and materials on discussing sexual violence with female patients. 2) Disseminate tools to health care organizations, regional centers, advocacy groups, and people with I/DD and their families, ultimately reaching 500,000 individuals. 

Both The Arc and The Board Resource Center have a shared vision that emphasizes accessibility, education, and empowerment for people with I/DD.
 

References

Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse interview for those with developmental disabilities. James Stanfield Company. Santa Barbara: California.

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The Arc on the ACA: “For People With Disabilities This Is a Matter of Health, Independence, and So Much More”

/in /by The Arc

Washington, DC – As the U.S. Senate passed a budget resolution that begins the process of repealing the Affordable Care Act (ACA), The Arc released the following statement and background information on why the law is critical for people with intellectual and developmental disabilities (I/DD):

“Repealing the ACA without a replacement turns back the clock to a time when too many people with disabilities were discriminated against in the health insurance market. For those who were lucky enough to find affordable coverage, many were faced life and death care decisions because of arbitrary financial limits under those plans, or were stuck with service or support options that segregated them from the community.

“All people with disabilities need comprehensive, affordable care – the ACA took our country a giant step forward toward accomplishing this goal. The Arc has long supported expanding Medicaid coverage to adults and raising the income eligibility. Due to those changes, millions of Americans, including people with disabilities, gained access to affordable, comprehensive health care.

“This is about people’s lives – their health, independence, financial stability, and so much more. The clock is ticking for millions of Americans, including people with disabilities,” said Peter Berns, CEO, The Arc.

The ACA made significant progress in expanding access to health care for individuals with I/DD. The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to individuals with I/DD and other disabilities and chronic health conditions who were not otherwise eligible for Medicaid, were in the waiting period for Medicare, or did not have access to employer sponsored health insurance because they were not working or working in low wage jobs without benefits.

  • The ACA provided federal money to support Medicaid expansion. The additional federal contribution to expanding Medicaid has helped many people with disabilities access health care. It has also enabled states to continue and expand programs that provide supports and services to people with I/DD.
  • Several provisions of the ACA were designed to assist states to rebalance their long term supports systems, allowing more people with I/DD to receive the services and supports they need while living in the community instead of costly and outdated institutions. These include the Community First Choice Option (CFC) and the State Plan Home and Community-Based Services Option (also known as 1915(k) and 1915(i).
  • The ACA reversed years of discrimination against people with disabilities and chronic health conditions through its insurance reforms. Prior to the ACA, when people with disabilities or chronic health conditions tried to purchase health insurance in the individual market they often could not obtain coverage at all because of their pre-existing conditions; others faced sky high premiums, or were only granted very limited coverage.

Learn more from The Arc’s ACA fact sheet, and sign up for our Disability Advocacy Network to know when to take action when it matters the most.

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The Arc Applauds Supreme Court Ruling Upholding Subsidies to Purchase Health Insurance Under the Affordable Care Act

/in /by The Arc

Washington, DC – In its 6-3 King v. Burwell decision, issued today, the U.S. Supreme Court held that federal tax subsidies are being provided lawfully in those states that have decided not to run the marketplace exchanges for insurance coverage. This is a huge win for the Affordable Care Act (ACA) and people with disabilities throughout the country.

The case was brought by Virginia plaintiffs alleging that the ACA forbids the federal government from providing subsidies in states that do not have their own exchanges. These exchanges allow individuals without insurance to shop for individual health plans. Some states created their own exchanges, but others allowed the federal government to run them. Approximately 85% of individuals using the exchanges qualify for subsidies to help pay for coverage based on their income.

“Today’s Supreme Court ruling upholding the subsidies to purchase health insurance in the federal exchanges is good news for many Americans, including people with intellectual and developmental disabilities. This challenge could have weakened the law overall, threatening all the protections that people with disabilities gained in the landmark law. This ruling should end the effort to dismantle this law, and instead the focus should be entirely on effective implementation,” said Peter Berns, CEO of The Arc.

The ACA is important to people with disabilities. It expanded coverage and reformed insurance to end discrimination against people with disabilities and enhance access to health care. The private health insurance marketplaces allow individuals or small businesses to shop for coverage and potentially receive subsidies to help offset the cost of insurance. The subsidies are key to ensuring affordable coverage. The health insurance reforms, the protections from high premium increases or out-of-pocket costs, and the coverage of “essential health benefits,” including mental health care and rehabilitative/habilitative services and devices, help assure that people with disabilities have affordable health care that meets their needs.

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 more than 665 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.

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A New Affordable Care Act Resource

/in /by The Arc

The Arc is excited to be part of the National Disability Navigator Resource Collaborative (NDNRC) a new resource for people helping the uninsured to gain coverage through the health insurance marketplaces. The collaborative is led by the American Association on Health and Disability (AAHD) and is supported by a one-year grant from the Robert Wood Johnson Foundation.

The Collaborative intends to develop training and technical assistance materials to respond to the need for cross disability training for people who are helping with the enrollment process. The Collaborative will address issues particularly important to people with disabilities such as the interplay between the private marketplaces, Medicaid and Medicaid alternative benefit plans, the need to carefully compare plans especially in the rehabilitation and habilitation benefits, the pharmacy benefits and mental health and substance abuse parity.

The funding for this project is scheduled to begin this week and the first meeting of the advisory organizations will take place in late October. The Arc recognizes the critical need for this work and looks forward to being a part of the effort.

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Some Children With I/DD at Greater Risk From Flu

/in /by The Arc

The Centers for Disease Control and Prevention (CDC) just published a report on the results of an on-line study they did during the 2011-2012 influenza season regarding vaccination rates for children with neurologic and neurodevelopmental conditions. Shockingly, the report indicated that only HALF of children surveyed were vaccinated or had an appointment to be vaccinated and out of those children who indicated they had an intellectual disability it was only slightly better at 52%. Numbers like this are alarming due to when you consider the 2009 flu outbreak in which 336 children died. Of those, 146 were children with neurologic or neurodevelopmental conditions (76% indicating they had an intellectual disability).

The majority of families rely and trust their physician to provide them with information, expertise and advice on what is best for their child to keep them healthy. However, the study also found that even after this outbreak occurred many physicians still do not rate children with an intellectual disability as being at a high risk and needing the vaccination.

According to the CDC bulletin a child with an intellectual or developmental disability that requires special needs is at a higher risk than others due to the fact that they are more susceptible to developing complications and infections from the flu virus. These complications can include pneumonia, bronchitis, and can also increase the effects of already current chronic health problems. These complications can lead to hospitalization and in severe cases death.

While every parent has the right to choose whether to get their child vaccinated or not, studies like this will help to increase awareness of prevention and knowledge of parents and physicians to help them to make more informed decisions.

As fall rolls in and the flu season quickly approaches you can visit the HealthMap Vaccine Finder if you need help finding a location in your area to get vaccinated.