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Chapters of The Arc Are Getting Media Coverage on the ACA and Medicaid

/in /by The Arc

Members of Congress are constantly seeking ways to know what’s going on back home and what their constituents care about. One way their offices do this is by monitoring their local and state newspapers every day. When constituents get published or quoted, members of Congress and their staff pay attention.

Several chapters of The Arc have gotten such well-deserved attention in the last several weeks. They have clearly and persuasively articulated the concerns of thousands of people with intellectual and developmental disabilities (IDD) in their communities regarding the Affordable Care Act (ACA) and the Medicaid program.

David Thielen, CEO of The Arc of East Central Iowa, had a guest column printed in the Iowa Gazette at the end of December regarding the effects of block granting Medicaid. He made the point that there are only three main levers when costs are shifted to cash-strapped states under a block grant – reducing eligibility, limiting services and supports, and cutting reimbursement to providers. Three weeks later, he followed up with another guest column published in the Cedar Rapids Gazette explaining the tangible benefits of the ACA to individuals with IDD. These include improvements to long-term supports and services, tax credits to improve affordability of health insurance, banning discrimination based on pre-existing condition, ending annual and lifetime caps, and requiring plans to provide a comprehensive set of benefits including rehabilitative and habilitative services and devices.

Robert Hage, President of The Arc of New Jersey wrote a letter to the editor on January 15 that appeared in five local news outlets. He discussed the increased access to private insurance and Medicaid expansion provided by the ACA, and noted that “repeal may make a good soundbite – but what Americans with IDD need now is more than talk – they need action that keeps the promise of the ACA.”

Three other chapters were interviewed in news stories in January, including a television interview. Nancy Murray of The Arc of Greater Pittsburg at ACHIEVA was quoted in the Pittsburgh Post-Gazette regarding Medicaid block grants, “Right now, [this] is the No. 1 concern among disability advocates. We are scared to death.” In an article in the Wisconsin State Journal, Lisa Pugh of The Arc Wisconsin reinforced the few, stark options that states would face under a block grant, “Any form of a reduced funding structure from the federal government means likely one of three things: cuts to programs, cuts to benefits, or elimination of certain populations of people in Medicaid.”

Heather Denman, Executive Director of The Arc of Harrison and Rockingham, appeared in a segment on Virginia’s WHSV 3 to highlighted the ACA’s provisions on ending annual and lifetime caps on health insurance coverage, eliminating pre-existing condition discrimination, and providing funding for services outside of institutions. “The biggest piece is just taking something away and not having anything that is there to replace it and worrying about people who have preexisting conditions,” she stated.

The Arc is proud of its network of over 660 chapters across the country who work hard everyday advocating for people with IDD and their families. We are pleased to see more and more in the press as a result of this as informed and passionate spokespersons.

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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 (IDD).

Background

This project will address the alarmingly high rate of sexual violence experienced by women with IDD. 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 IDD 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 IDD 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 IDD 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 IDD 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 IDD 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 IDD.
 

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 (IDD):

“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 IDD. 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 IDD 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 IDD.
  • Several provisions of the ACA were designed to assist states to rebalance their long term supports systems, allowing more people with IDD 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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Time to Check Your Health Insurance

/in /by The Arc

If you are uninsured or looking for affordable health insurance, now is the time for you to look! During “open enrollment” you can purchase private health insurance through the marketplace in each state. Depending on your income, you may be eligible for assistance with your health insurance costs.

If you currently have insurance through the marketplace, you should look at your current plan and determine if it will continue to meet your needs, or select a better plan. If you do not take action, you will be automatically re-enrolled in your current plan or a similar plan. You should carefully review all health insurance notices and updates. Re-enrollment provides an important opportunity to report any changes to your income. If you income has increased, reporting changes to the marketplace may help you avoid paying future penalties.

2017 Open Enrollment
November 1, 2016
Open enrollment begins

December 15, 2016
Enroll before this date to have coverage January 1, 2017

January 31, 2017
Open enrollment ends

Why you should check your coverage:

  • Even if you like your health plan, new plans may be available and premiums or cost sharing may have changed since last year.
  • Even if your income has not changed, you could be eligible for more financial assistance.

If you have a disability or a health condition, pay attention to possible changes:

  • Are a broad range of health care providers included in the health plan’s network of providers?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent that other “physical” health benefits are covered?

Where to get help?

Health insurance can be complicated. If you or your family member needs assistance with understanding the options, healthcare.gov can help. This website has information about seeking assistance in local communities, explanations of health insurance terms, enrollment information and much more. There is also a 24-hour phone line for consumer assistance at 1-800-318-2596 to call for help.

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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 (IDD), 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Relias Learning and The Arc Announce New Partnership to Benefit State and Local Chapters of The Arc

/in /by The Arc

Washington, DC – Relias Learning, the leader in online training and compliance solutions for the healthcare market, announced today that it is partnering with The Arc, the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (IDD) and their families.

Relias Learning will offer chapters of The Arc specialized rates on its Intellectual and Developmental Disability Training Library, which contains over 200 courses designed to improve competency and performance in community-based support, positive behavior support, autism support, customized employment, health and safety, and more. Relias Learning’s Applied Behavior Analysis (ABA) and Autism Library provides courses approved by the Behavior Analyst Certification Board (BACB) for continuing education needs for Board Certified Behavior Analysts (BCBAs) and to meet training requirements for the RBT certification.

“We are honored to announce our partnership with The Arc,” said Jim Triandiflou, CEO of Relias Learning. “Relias Learning is dedicated to providing tools necessary to build competencies and confidence in the Direct Support Workforce supporting those with intellectual and developmental disabilities. Delivering quality care begins with a skilled and trained workforce. Partnering with The Arc will put training in the hands of more people nationwide and help us to continue developing and delivering the best programs available.”

“Relias Learning has been a longtime friend to The Arc and we are thrilled to be entering into this partnership. This agreement will enable more members of The Arc’s network to utilize all of the high quality materials that Relias Learning has to offer. Continuing education courses, like the ones available, are essential to making sure employees are on the cutting edge of their respective fields. Working together The Arc and Relias Learning will be able to better serve individuals with intellectual and developmental disabilities and improve outcomes for them and their families,” said Peter Berns, CEO of The Arc.

In addition to online training libraries, courses are offered through an individual course-by course purchase option via www.academy.reliaslearning.com.

Through the new partnership, The Arc member chapters are eligible for exclusive discounts on learning management library subscriptions and Relias Academy courses.

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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 IDD 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.

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Act Today to Protect Yourself From the Flu

/in /by Julie Ward

Guarding yourself and your loved ones during flu season has always been important, but a recent study by the Centers for Disease Control (CDC) has shown how important it truly is for individuals with intellectual and developmental disabilities. The study showed that children with intellectual disabilities, cerebral palsy, and other neurologic disorders were at a great risk of complications from the influenza virus.

The study, which focused on the 2009 H1N1 flu outbreak, found that a disproportionately high number of kids with neurological disorders died from the virus. The 2009 flu season was particularly severe and the number of children who passed away was five times higher than the median for the previous five flu seasons.

“We’ve known for some time that certain neurologic conditions can put children at high risk for serious complications from influenza,” said Dr. Lyn Finelli, chief of the surveillance and outbreak response team in CDC’s Influenza Division. “However, the high percentage of pediatric deaths associated with neurologic disorders that occurred during the 2009 H1N1 pandemic was a somber reminder of the harm that flu can cause to children with neurologic and neurodevelopmental disorders.”

Now is the time to protect yourself and your family. The CDC is recommending that everyone over 6 months old get an annual influenza vaccination. To learn more about the flu and where to get a flu shot visit the CDC website.

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The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.

“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act. Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities. It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long.

“But the ruling is not perfect for people with IDD. The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with IDD who would have benefited from the expansion could be left behind. Medicaid is an incredibly important lifeline for people with IDD, providing health care and long term services and supports.

“We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc.