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In Final Days of Trump Administration and In Middle of Pandemic, Federal Officials Approve Cuts to Medicaid in Tennessee

Washington, D.C. – As the Trump Administration wraps up its tenure, officials at the Centers for Medicare and Medicaid Services (CMS) finalized an agreement with the state of Tennessee that will cut funding for the Medicaid program in that state, known as TennCare.

“This decision will harm people with disabilities, low-income families, and older adults in Tennessee, and sets a dangerous precedent across the country.

“It will cut federal money coming in, and fundamentally change the Medicaid program and Federal funding guarantee to the detriment of people with intellectual and developmental disabilities. There will be less federal oversight and accountability for beneficiary protections, and its implementation will have devastating consequences on access to prescription drugs. And to take this action while a dangerous pandemic rages across the country – stretching our health care system, impacting state resources, and harming the economy – is simply unconscionable.

“We are very skeptical about the state’s claim that some of the savings in this restructuring scheme might be used to eliminate the waiting list for services for people with intellectual and developmental disabilities. Right now in Tennessee, there are already challenges with providers because the low reimbursement rates for many services make it difficult to hire and retain qualified workers. Elimination of the waiting list is only relevant if people are getting what they need, when they need it, and cutting funding won’t help. The concept that less money will lead to more innovation and more people getting services is a fallacy.

“The incoming Administration must address the inequities that this block grant will create and ensure that this harmful policy is not replicated in other states.. People with disabilities should not have to endure these cuts now in this public health crisis, or in the future,” said Peter Berns, CEO, The Arc.

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 over 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A woman in a motorized chair plays with a small dog on a grassy field in front of houses

Important Step for Community Living for People with Disabilities: Congress Makes Overdue Investment in Money Follows the Person Program

Last night, Congress passed three years of funding for the Money Follows the Person program. This program provides federal dollars to move people with disabilities out of large congregate settings like institutions and nursing homes, and back into their homes and communities. This is an important step in our decades-long fight to bring people with intellectual and developmental disabilities (IDD) out of institutions to live meaningful, independent lives in the community. 

This news comes after eight short-term reauthorizations, one as short as 7 days, that almost made the program collapse because states couldn’t count on the federal funds and were shutting down their programs, despite the desperate need for the funding due to the pandemic. The last round of funding for the effective program was set to expire on December 20, so it’s future was uncertain in the waning days of the Congressional session.

“Without this investment, more people would continue to be stuck in institutions and nursing homes – and the COVID-19 pandemic has shown how dangerous these settings can be. An enormous barrier for people with disabilities is access to the supports and services necessary to make a life in the community, so Congress did the right thing by investing in this program. It’s a victory, but one harder to celebrate given the fact that once again, Congress absolutely failed to address the dire needs of people with disabilities, their families, and service providers in their latest COVID-19 relief deal,” said Peter Berns, CEO, The Arc.

The Money Follows the Person (MFP) program provides states with 100% federal Medicaid funding for one year to transition people out of institutions and nursing homes, and back to their communities. MFP has moved more than 105,000 seniors and individuals with disabilities out of these institutions, and has helped 44 states improve access to home and community-based services (HCBS). Medicaid requires states to provide care in nursing homes, but HCBS is optional. The MFP program is then critical because it incentivizes investment in HCBS by providing federal funding for transitional services for individuals who wish to leave a nursing home or other institution.

The MFP program supports people to move back home by providing necessary community-based supports like staff to support individuals in their homes, home modifications, and HCBS. The program is also cost-saving for states – longitudinal studies of the program show  20% savings per beneficiary per month for state Medicaid programs and most importantly, better quality of life outcomes for people receiving services in the community instead of institutional care.

“This program will make it possible for more people with disabilities to change their lives, on their own terms. We’ve got a lot of work to do in the new year to continue to help people with disabilities to live in safer settings with the right services for each individual, and the necessary resources for the dedicated staff supporting them. Families are struggling too, and The Arc will continue to lead this fight for equality and justice during and after this public health crisis,” said Berns.

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Shut Out Again: COVID-19 Relief Package Again Excludes Needs of People With Disabilities, Families, Service Providers

After months of hardship and danger from the COVID-19 pandemic, and relentless advocacy by The Arc and advocates across the country, last night Congress passed a COVID-19 relief package without critical funding for people with disabilities to access the services and supports necessary for a life in the community.

As COVID-19 continues to spread nationwide, people with intellectual and developmental disabilities are struggling to access the services they need to continue to live in the community, and their families struggle with balancing work and caregiving responsibilities. Congress should have allocated desperately needed funds to support home and community-based services but they fell short.  They also failed to provide funding for personal protective equipment (PPE) and resources for the workforce that has supported people with disabilities tirelessly throughout this pandemic.

Congress did authorize a second round of smaller stimulus payments, but once again left out many people with disabilities – those who are defined by the IRS to be “adult dependents.” This group was inexplicably cast aside despite bipartisan support for including them.

Congress extended tax credits available for business to cover paid leave, but eliminated rules about when business must provide leave and did not extend the tax credits to cover all caregivers as the pandemic continues. Congress also failed to provide a solution to a COVID-related overpayment issue with Social Security benefits. The needs of people with disabilities, their families, and the workforce that supports them were excluded to honor an arbitrary bottom line.

“It’s unconscionable that Congress ignored the dire needs of people with disabilities, their support staff, and families as this pandemic rages across the country. For months, our leaders have known the consequences of their inaction. People with disabilities are getting infected at higher rates. Support staff are putting their lives on the line day and day out with the protection they need. And families are struggling with it all. Yet in the waning days of 2020, they have shut us out in the cold in COVID-19 relief legislation,” said Peter Berns, CEO, The Arc.

Home and community-based services, or HCBS, make life in the community possible for millions of people with disabilities who often need help with things like eating, dressing, personal hygiene, and managing health care or finances. As COVID-19 spread in congregate settings out of the community, like nursing homes and institutions, HCBS became even more important for health, safety, and independence. Without this critical federal emergency funding, as state budgets continue to take hits due to the pandemic, the HCBS systems will be hit hard.

Through The Arc, almost 150,000 calls and emails have flooded Congress in recent months to demand action for funding for these services, along with the PPE needed by staff to safely deliver these services to people with disabilities. Chapters of The Arc across the country have been scrambling throughout the pandemic to access PPE and other medical supplies. They are in need of resources to cover these costs as well as the funding to pay their direct support professionals fairly for the vital work they do.

“This is not hyperbole – this is life and death for people with disabilities and their support systems. Before, during, and someday after the pandemic, a life in the community is vital for people with disabilities. Congress turned its back on desperately needed funds to support these services, protect the staff doing the work, and pay them for the risks they are taking in this public health crisis,” said Berns.

silhouette of a hand casting a paper ballot into a box

The Arc’s Statement on the 2020 Election

The Arc released the following statement about the 2020 Presidential election:

“This was an historic election given the challenges our nation faces, and voters turned out in record numbers to make their choice about our future. While people with disabilities still face far too many barriers to accessing the right to vote, including physical obstacles and state laws that prohibit some people with disabilities from voting, millions persevered amidst health and safety concerns to exercise their right.  Their votes counted, as did the votes of their family members, friends and supporters.  

“While the election is over, our nonpartisan advocacy continues at the local and state levels, in the halls of Congress, at the Supreme Court, and will continue in 2021 with the Biden Administration.

“We are still in the COVID-19 crisis. This virus has disproportionately impacted people with intellectual and developmental disabilities, their families, and direct support professionals.

“People with disabilities have died from COVID-19. They have faced discriminatory medical policies and practices. Lives have been interrupted, inclusion in the community has been snatched away. Their family members, who were already taking on the majority of caregiving responsibilities, have taken on even more, in many instances disrupting their own lives. And the dedicated direct support professionals have dealt with challenges in protecting health and safety without the necessary protective equipment.

“These impacts are still with us today and will be until our country gets this virus under control and policies in place that meet the needs of people with disabilities, their families, and caregivers. We also must continue to address the many injustices that people with disabilities experience on a day-to-day basis.

“In just a few days, the U.S. Supreme Court will hear a case that threatens to undo all the progress we made with the Affordable Care Act. Access to consistent and reliable healthcare is critical for individuals with disabilities, and the law created much-needed reforms to health insurance, addresses systemic discrimination, and expands coverage.

“We must address the high unemployment rates of people with disabilities and the economic insecurity too many families and individuals face. We have to support families as they struggle with caregiving responsibilities by implementing inclusive paid leave.

“There still is a lot of work to do and, just as The Arc has done throughout our 70-year history, we will not rest until the humanity and needs of people with disabilities are respected,” said Peter Berns, CEO, The Arc.

close up of medical form with stethoscope

The Affordable Care Act: What’s at Risk?

The Affordable Care Act (ACA) made significant progress in expanding access to health care for individuals with intellectual and/or developmental disabilities (IDD). Access to consistent and reliable healthcare is critical for individuals with IDD, and the ACA created much-needed reforms to health insurance, addressed systemic discrimination, and expanded coverage. Yet it will all be at risk on November 10 when the U.S. Supreme Court hears a case seeking to overturn the law. Leading up to the ACA’s day in court, here is a primer on what the ACA does for people with IDD, and what’s at stake if the law goes away.

The ACA:

  • Helps people get health insurance
  • Requires that plans can’t exclude you or charge you more based on preexisting conditions
  • Bans benefits caps (annual and lifetime caps)
  • Requires all plans to cover “essential benefits”
  • Provides financial assistance for low-income people to access healthcare 

Loss of Health Coverage: Without the ACA, millions of adults and children may lose their health coverage, or it may become unaffordable. Millions of families may be left with limited and expensive options, with inadequate coverage. 

Pre-existing Conditions: We are concerned about the possible loss of protections for people with pre-existing medical conditions, including people with IDD. Millions of Americans have “pre-existing” medical conditions that could disqualify them from buying a health insurance policy if the ACA is dismantled. A “pre-existing condition” is any health problem a person has before new health coverage starts. It includes a broad range of common conditions such as diabetes, high blood pressure, cancer, or seizure disorders, including all types of disabilities. 

Without the protections of the ACA, any “pre-existing condition” could mean a person or family buying insurance would pay much more for a policy, if they could get one at all. Before the ACA, an insurer could outright deny people coverage for a specific pre-existing condition, charge them more, cancel a policy after the fact for utilizing needed health care, or deny health insurance coverage overall. Without the ACA, employers could drop coverage for any or all of the conditions they are now required to cover. The Trump Administration publicly committed to “protecting individuals with pre-existing conditions” but there are no specifics on how this would be accomplished.  

COVID Connection: Some of the millions of Americans infected by COVID-19 will have long-term health conditions that are “pre-existing conditions.” This new reality could make it challenging to find health insurance.  And millions of Americans are now also without jobs and without employer-provided health insurance, so the need for affordable care is even greater.

Lifetime and Annual Limits: Before the ACA, lifetime and annual caps were permitted. Even with insurance, this meant enormous out-of-pocket costs or losing your insurance if medical bills cost more than the capped amount. Individuals and families face going without needed treatment or bankruptcy when the caps are exceeded.

Essential Benefits: Before the ACA’s passage, many plans did not cover important services, like maternity care or mental health treatment. The ACA requires all plans to cover 10 “essential health benefits,” including rehabilitative and habilitative services and devices that are vital to people with IDD.

Preventive Care: If we lose the ACA, we also lose preventive care with no out-of-pocket cost. This means adults and children would no longer be able to access important services including immunizations, preventive screenings, well baby and well child visits without cost-sharing. Fewer people may get preventive exams to catch medical issues before they became serious or life-threatening (and more difficult and expensive to treat).

Expanded Coverage for Children until age 26: Prior to the ACA, many health plans removed adult children from their parents’ coverage, regardless of whether they were a student or lived at home with their parents. Under the ACA, plans that offer coverage for children must cover them until they turn 26. It’s been an important coverage expansion for millions of young adult children who have been able to stay on their family health insurance plan.

Affordability Provisions and Loss of Federal Subsidies: 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 millions of people, including individuals with IDD and other disabilities who were not otherwise eligible for Medicaid. If we lose the ACA, States would be forced to cover the 90% of the cost of the Medicaid expansion that the federal government currently pays, which may be all but impossible in the current economic situation. We may also lose refundable tax credits and cost-sharing assistance that helps reduce the burden on lower-income individuals and families.

Long Term Supports and Services: Several provisions of the ACA were designed to assist states to rebalance their long termsupports systems and invest in the community instead of costly and outdated institutions. States who expanded these options could face a devastating blow if the ACA is struck down. For example, with Community First Choice or 1915(k), 392,7000 individuals in 8 states (California, Connecticut, Maryland, Montana, New York, Oregon, Texas and Washington) would lose services totaling $8.7 billion per year. With respect to the State Plan Home and Community-Based Services Option or 1915(i), 81,000 individuals in 10 states and DC (California, Connecticut, Delaware, DC, Idaho, Indiana, Iowa, Mississippi, Nevada, Ohio, Texas) would lose services totaling $641 million per year.  This change would hurt people with IDD and curtail their opportunity for a full life in their community.

Protecting Civil Rights in Health Care: The ACA also includes the fundamentally important Section 1557 nondiscrimination provision, that prohibits discrimination on the basis of disability (and other protected categories) in health programs and activities.

Impacts on the Health Care System: Overall, a court decision that strikes down the ACA (or important parts of it) could have a broad, harmful impact on the health care system, especially during a pandemic when resources and staff are already strained. It would also increase uncompensated-care costs for hospitals. Health care systems and hospitals that serve disproportionately high numbers of low-income people will be the most at risk, and could be forced to cut services.

A mother, father, and their two adult children stand smiling with their arms around each other in front of trees,

Care During COVID-19: An “Essential” Working Family’s Story

By Sethany Griffin

A mother, father, and their two adult children stand smiling with their arms around each other in front of trees,

I am a member of The Arc and both a provider for adults and children with disabilities and a mother of an adult with autism and an intellectual delay. My son Karl is 19, and he typically attends an adult transition program five days a week where he learns vocational skills in the hopes of someday finding him a paying job. He also focuses on social interactions, self-advocacy, problem solving, self-care skills and strength building through physical therapy. 

My son’s transition program, like so many others, closed temporarily and without notice in the early months of the coronavirus pandemic. Like many families, we were left scrambling to ensure his needs were being met and that he wasn’t left alone, grappling with the unknown timetable of when things would be back to normal.

I work as the Director of Family supports for a large non-profit agency for families like myself, with children and adult family members with disabilities. My husband, Dana, had just started a new job and was not yet eligible for leave time. Our older son DJ, who is also Karl’s co-guardian, works as a direct service professional at a day program for the same non-profit as I do. All three of us are considered “essential workers.” We are also the only people who can effectively support Karl at home.

It has been—and continues to be—a huge struggle trying to juggle the work schedules of three “essential” adults while ensuring someone is staying with my son who can both understand and meet his needs. Karl is a wonderful young man. He loves all things Marvel and can tell you anything you ever wanted to know about Marvel heroes and the TV show “Supernatural.” He likes to ride his adult tricycle around the neighborhood and swim, and he wants to make money to buy all the Marvel Legends action figures in existence. When he is anxious, which is almost always, he knits his brows and rocks in place. For the unfamiliar onlooker, he can appear terrifying. He is also 6’6 and 330 pounds and can become aggressive when he is frustrated or scared. This isn’t something that just anyone could handle.
  
Ultimately, we decided that DJ would take an unpaid leave of absence to care for his brother. DJ is still living with us, so we covered his rent and paid for his food. But, going without a paycheck meant that he was no longer able to purchase non-essentials or save any money. By covering his bills, we have made our family financial situation even more precarious.

It is unfair to all of us that he had to make this sacrifice, but we weren’t left with any other choices.

Now that our state has started to re-open, we find the struggle even harder. All four of us are in one form or another back to work. When Karl returned to his program, he did it in a hybrid fashion, He doesn’t do well with “remote teaching” so those times were essentially useless and required a full-time caregiver. I am lucky enough to be able to work some hours from home, and my husband has started earning his paid time off. We are making it work, but this isn’t what “vacation time” was supposed to be used for. Right now, if Karl were to spike a fever for any reason, he would be required to stay home for two weeks. I don’t know what we are going to do when that happens, but we are a strong and resilient family, so we will continue to brainstorm and try to find viable solutions.

For people with disabilities and their families, it is so important that paid leave policies include all caregivers—not just parents. Siblings, cousins, Godparents, aunts, uncles, and grandparents have all stepped in and tried to help us. Paid leave for all caregivers would remove so much pressure from families who are already struggling with the expenses of caring for an individual with additional emotional and healthcare needs. A paid leave option for all caregivers is long overdue.

The United States Capitol Building

The Arc Supports National Coronavirus Commission Act to Assess Response to Pandemic for People With Disabilities

Today, Members of the U.S. House and Senate introduced the bipartisan National Coronavirus Commission Act of 2020. The proposed legislation seeks to create an independent, non-partisan commission to assess the nation’s preparedness and response to the COVID-19 pandemic. The Commission would also make recommendations to improve readiness in the future. The Commission has a specific charge to review the impact of COVID-19 on people with disabilities.

The Arc supports the bipartisan bill and believes establishing a National Coronavirus Commission is important to ensure that as a country we fully understand the extraordinarily detrimental impacts the pandemic has had on millions of people with disabilities across the country. The pandemic continues to disproportionately harm them. Recognizing where the country’s response has fallen short and committing to doing better in the future is key to truly moving forward in a way that is intentional and inclusive of people with disabilities.

“We are pleased to support this important bi-partisan effort to ensure that we have a full accounting of the National response to the COVID-19 pandemic. We specifically thank Senators Menendez and Collins for ensuring that the Commission is charged with reviewing the health and economic impacts of the pandemic on people with disabilities, a population that is far too often overlooked in the face of crises, this information will be vitally important,” said Nicole Jorwic, Senior Director of Public Policy at The Arc.

We are hopeful the bill will move swiftly through Congress as people with disabilities work to rebuild their lives.

Eviction Moratorium Welcome Step, Further Action Needed

WASHINGTON – The Centers for Disease Control (CDC) has taken vital action to help millions of tenants, including many people with disabilities. The Arc is encouraged that this week the CDC issued a national, broad moratorium on evictions for nonpayment of rent. The temporary halt on evictions authorized by the Coronavirus Aid, Relief, and Economic Security (CARES) Act has expired. The CDC’s order is crucial to help ensure that people with disabilities who are suffering job loss and economic instability are not forced out of their homes and into homelessness or unsafe living situations during a global pandemic.

“Many people with intellectual and developmental disabilities (IDD) have few financial resources and remain among the country’s poorest. During the pandemic, many people with disabilities and their families face even more economic uncertainty, loss of steady income, and unemployment. It would be deplorable to add homelessness to the list. We are encouraged to see the CDC recognize the potential housing disaster that is upon us,” said Peter Berns, CEO, The Arc. “Keeping people affordably and stably housed during this public health emergency is critical.”

This national moratorium is a welcome step, but we need further action. We continue to call for an extended eviction moratorium into 2021, sufficient emergency rental assistance to help cover back-rent when the moratorium ends, and strengthened foreclosure protections.

“Even before the COVID-19 crisis, people with disabilities and their families faced a national shortage of accessible and affordable housing, particularly low-income renters. Now, the long-term consequences could be dire. Without additional measures to prevent, and not just postpone, evictions and foreclosures, many people will still be at risk of losing their homes, and people with IDD will face even greater obstacles to living in the community rather than segregated institutions and other congregate settings. We must ensure that people with IDD can stay in their homes and remain in the community during a time when our health and safety may depend on it,” said Berns.

Congress Adjourns for Recess, Failing to Address Needs of People With Disabilities

WASHINGTON – The negotiations around a fourth COVID relief package have reached a stalemate and people with disabilities will be worse off for it. Despite the House passing a comprehensive relief package on May 15, 2020, the Senate has not brought that bill to a vote. They adjourned last night for August recess, which will only make the struggles facing people with disabilities, their families, and support system infinitely worse.

Negotiations have collapsed, and by walking away from the table, our leaders have failed to address the dire needs of people with disabilities, their families, and direct support workforce in the middle of a pandemic. We are outraged that Senators are returning home to their districts for recess without passing coronavirus relief legislation to help the millions of people who are suffering.

“This political standoff is at the expense of millions of people with disabilities, their families, and service providers like our chapters scrambling to make sure that people with disabilities have the care they need. Three months of inaction are inexcusable, and now, they’ve left town without a resolution. The Senate must return and take up the House bill and provide solutions to the millions of people who do not know how they will get through this national crisis,” said Peter Berns, CEO, The Arc.

This impasse means that the very systems that people are relying on to address the crisis and that provide the services that many people with disability rely on, such as Medicaid, are in jeopardy. Without proper funding, these systems will face massive budget cuts and people with disabilities will be the ones who lose.

In May, the House of Representatives passed legislation that includes many of the things that people with disabilities need, but a recent proposal from some Senators does not address most of the critical needs of people with disabilities and has not even been brought up for a vote. The Senators returning home this week have abandoned the millions of people with disabilities who are relying on them. Congress must pass a bill that includes:

  • Dedicated funding for Medicaid home and community-based services (HCBS). These funds are necessary to serve people with disabilities in their homes and communities and will provide better wages and support for the DSP workforce. Access to HCBS will limit the risk of people with disabilities being put in institutions.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. DSPs must be designated as essential workers so that they can get access to the PPE and medical supplies they need.
  • Paid leave for all caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
  • Economic impact payments for all people with disabilities. Stimulus payments need to be available to everyone, including adults with disabilities who are claimed as dependents.

“People with disabilities and those who support them can’t be left behind. #WeAreEssential and it is far past time for Congress to recognize that and act,” said Berns.

New HUD Rule Weakens Fair Housing Protections for People With Disabilities

WASHINGTON – The U.S. Department of Housing and Urban Development (HUD) is moving forward with a harmful rule that threatens the protections of The Fair Housing Act for millions of people with disabilities. The new Affirmatively Furthering Fair Housing (AFFH) rule, called the “Preserving Community and Neighborhood Choice,” published today, is a big step backward from efforts to fight housing discrimination and segregation in the U.S.

People with disabilities face a profound and longstanding housing crisis, including the lack of safe, affordable, accessible and integrated housing, and significant housing-related discrimination. These circumstances, based in a history of exclusion and segregation, make it difficult for people with disabilities to live and participate in their community, and puts many people with disabilities at risk of unnecessary institutionalization or homelessness.

Under the new rule, HUD has effectively given up on ensuring that housing agencies and communities receiving HUD funding significantly advance fair housing. It means less oversight, weaker to no standards, and lost opportunities to improve housing for people most in need, including people with disabilities. The new rule strips away the prior regulations and assessment tools, which included relevant data, analysis and public input. It replaces them with a toothless self-certification, where “any action” related to promoting fair housing is sufficient. The final rule also eliminated language requiring steps to expand opportunities for people with disabilities to live in “the most integrated setting appropriate.” And it makes these changes based on a process that ignores the comments received on the earlier, proposed version.

“A home, either rented or owned, is the cornerstone of independence. Living as independently as possible and being part of a community are crucial for people with intellectual and developmental disabilities, but HUD’s new rule could result in many people with disabilities continuing to be stuck in or forced into institutional settings, into housing that is substandard or unsafe, or homelessness, instead of a life they choose in the community,” said Peter Berns, CEO, The Arc. “The Arc will advocate to reinstate this critical tool to desegregate communities and continue to fight for fair housing.”