How The Family and Medical Leave Act Saved My Family

This is a new series at The Arc Blog called #HandsOff. Each month, we will feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Debbi Harris

As we celebrate the 25th anniversary of the Family and Medical Leave Act (FMLA), I am compelled to reflect on the early and difficult birth of our son, Joshua, and the challenges that my family and I faced in securing the leave we needed to care for him. The FMLA allows covered employees to take up to 12 weeks of unpaid leave for certain family and medical reasons, generally with a guarantee to keep their job and benefits afterward. This Act has been invaluable for many people with disabilities and their families – and as you’ll learn from my story, its protections can sometimes mean the difference between the life and death of a loved one.

Josh and Debbi

Josh and Debbi
Photo by Jerry Smith

Josh was born in January of 1993, about 8 weeks before he was due. Complications immediately prior to and during labor led to an emergency C-section. With my husband Victor by my side, we learned upon his delivery that Josh had experienced a grade IV brain hemorrhage in utero, and had suffered from anoxia and hydrocephalus at birth as a result. The next few months in the NICU became a rollercoaster of medical ups and downs, as doctors tried to stabilize Joshua’s initial condition, while, at the same time, treat the morbidities that come with prematurity, along with the unanticipated medical effects of what would later emerge as Joshua’s disabilities.

At the time, I was working full-time as a technical writer and Victor was a full-time applications developer, under contract. We didn’t qualify for any financial supports and were unfamiliar with programs like Medicaid – but we were able to rely on the private insurance I received through my employer to provide Josh’s life-sustaining medical care. We also already had two children at home, making it imperative that both of us remain in our jobs to earn enough to support them, as well.

In the first year of his life, Josh had 10 surgeries and as many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. Victor and I tried our best to juggle our jobs with daycare, Kindergarten, and Victor’s duties in the U.S. Marine Corps Reserve, all while bearing the anxiety and sadness of watching our youngest son go through this terrible ordeal. We spent countless days and nights at the hospital, often bringing our other boys along and letting them play with their toys underneath the giant metal PICU crib that held their little brother.

Despite the new stresses in our lives, I was determined to make up for any lost time at work and to meet my professional obligations. I never missed a deadline, even if that meant reporting to the office late at night and staying until the early hours of morning. It was exceedingly difficult. Still, my supervisors lacked compassion for our situation, and I feared what the loss of my job would mean for Josh – if we were to lose the health insurance that was, in those very moments, sustaining his life.

Fortunately, about a month after Josh was born – February 5, 1993 – the FMLA had become law. With the pressures at work mounting, and Joshua’s medical outcomes becoming less clear, I knew the FMLA would be my family’s last recourse to getting the time we needed to support our son.

At the time, the FMLA was new and awareness about the law was often low, including at my company. As I began to explore how to request time off through the FMLA, it became apparent very quickly that I would receive little to no support from my corporation in my decision. Even more shocking, my boss and some of my colleagues were openly critical of my need to take that time, implying that my son’s condition would simply create a lasting burden for the organization. Lack of knowledge created unwarranted fears and tension. My hope was only to have the time and resources to keep my son alive, and to give him the opportunity to thrive. Our family’s experience with Josh was a clear example of the need for the law.

Thankfully, I was ultimately able to use FMLA leave – but only after being required by my employer to first use up all of my vacation, sick time, and long- and short-term disability. Afterwards, when Josh was perhaps a year old the FMLA protected me from losing my job and our health insurance, meaning that Josh could continue to receive his vital medical care.

Josh’s needs were still critical when he first came home from the hospital at almost four months old. He was technology-dependent, needed constant skilled nursing assessment, and was discharged on ‘in lieu of hospitalization’ status. While he was prescribed home care nursing, it was difficult to find consistent, trained home care nurses, which forced me to decrease my hours to half-time and, ultimately, to work from home two days a week. After a trying period, my husband secured a job that provided us with benefits and enough income to support our family, which allowed me to resign from my job to care of our children full-time.

Without the protections offered by the FMLA, I cannot say whether Josh would still be with us – which is why I am grateful for the protections it offered us and why I will continue to speak out in support of its policies. As I reflect on our experience in fighting for leave in the months and years after Josh’s birth, I cannot help but think of how different our situation would have been if we were allowed paid family leave. The FMLA gives families like ours a chance to take care of their loved ones without bearing the repercussions of losing out on employment or health insurance. As the FMLA enters its 25th year, I believe that the next step – paid leave – should be a protected right of all working individuals.

Work Requirements for Medicaid Don’t Work for People with Disabilities

Washington, DC – The Arc released the following statement in response to the Trump Administration’s issuance of guidance about how states can include in their Section 1115 waiver proposals requirements some recipients of Medicaid work to receive coverage.

“The Arc opposes this reversal of long standing CMS policy.  The Arc is also deeply concerned that critical policies we have long supported, such as Medicaid buy in programs, habilitative services, and supported employment services, are now being used to justify policies that would allow states to create barriers to Medicaid eligibility.

“Cutting off Medicaid won’t help anyone to work. Medicaid provides vital health care access that is a key ingredient for potential to be a part of the workforce.  Many people with serious health conditions require access to health care services to treat those health conditions and to maintain their health and function.  Furthermore, Medicaid specifically covers services, such as attendant care, that are critical to enable people with significant disabilities to have basic needs met, to get to and from work, and to do their jobs. Requiring individuals to work to qualify for these programs would create a situation in which people cannot access the services they need to work without working – setting up an impossible standard.

“The notion that this guidance excludes all people with disabilities is misleading. The protections the guidance claims to provide to people with disabilities are inadequate and will likely not protect the rights of people with disabilities.

“This is a bad policy, and we encourage the Administration to rescind it,” said Peter Berns, CEO, 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.

The Arc Responds to Senate Passage of the Tax Cuts and Jobs Act – Services and Supports for People with Disabilities at Risk

Washington, DC – The Arc released the following statement in response to Senate passage of the Tax Cuts and Jobs Act:

“Today the Senate took a big and dangerous step closer to cutting the services and supports that people with disabilities rely on to be a part of their community.

“The Arc’s longstanding position on tax policy is that it should raise sufficient revenues to finance essential programs that help people with disabilities to live and work in the community. The Arc also supports tax policy that is fair and reduces income inequality; people with disabilities are twice as likely to experience poverty.

“Both the House and Senate versions of the Tax Cuts and Jobs Act fail to meet either standard. By reducing federal revenue by at least $1.5 trillion, the Senate bill turns up the pressure on Congress to cut Medicaid and other programs that are critical to people with intellectual and developmental disabilities.

“Additionally, the repeal of the Affordable Care Act’s individual mandate will have a dire impact on nearly 13 million Americans, including those with disabilities, and will increase premiums for people buying insurance on the health insurance exchange.

“The disability community has fought against threats to vital programs and won several times this year, and we are prepared to do it again. As the House and Senate finalize the bill, we encourage our advocates across the country to act now. We’ve shown again and again this year our strength, and now we have to do it again, or we will be right back where we started in the coming new year,” said Peter Berns, CEO, The Arc.

 

About 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 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.

The 2018 Congressional Budget and Tax Cuts – What It Could Mean for People with Disabilities and What We Must Do

The CapitolThis year’s Congressional budget process is particularly important for people with disabilities and their families. The recently-passed House and Senate fiscal year 2018 budgets set overall spending and revenue targets for the next 10 years. But beyond this basic function, Congressional budget writers have been clear that an underlying goal of the 2018 budget is to set the stage for a massive tax cut bill.  The Arc is concerned that significant loss of federal revenue will result in cuts to programs for people with disabilities

The Senate passed its Budget on October 19 and the House passed the same Senate Budget a week later. House Speaker Paul Ryan (R-WI) is aiming to pass a tax cut bill before Thanksgiving that, under budget rules, can be passed by a simple majority vote in the Senate. A great deal is at stake. Here’s what it could mean for people with disabilities, and what we must do.

What is in the Congressional Budget?

Congressional BudgetThe Budget allows for up to $1.5 trillion to be added to the deficit over 10 years. Congressional committees are now drafting tax cut legislation that does not have to be paid for unless it goes above $1.5 trillion. But if the cost of tax cut legislation goes above that amount, then any amount over that could come directly from cuts to Medicaid, Medicare and many other programs that are critical for people with disabilities. The Budget assumes, but does not require, some $5 trillion in spending cuts over 10 years, as well as optimistic projections of economic growth, to make up for lost tax revenue.

What Do We Know About the Proposed Tax Cuts?

While the tax cut legislation has not yet been developed, the tax plan framework released by President Trump and key Congressional leaders in September indicates that its benefits may be heavily tilted towards wealthy individuals and corporations. Several types of taxes that it proposes to eliminate or reduce are only paid by very wealthy households, such as the estate tax that is only paid by individuals with estates worth over $5.5 million. See The Arc’s statement on the tax framework.

What Will The Arc Be Watching Out For?

At this point there are many unknowns. Here are five things that The Arc will be watching out for:

  1. Cuts To Medicaid, Medicare, Supplemental Security Income (SSI) or Other Critical Programs To Pay For Tax Cuts. The Budget instructs the Senate Finance Committee and the House Ways and Means Committees to develop legislation. In addition to taxes, the Senate Finance Committee has jurisdiction over many critical programs, including Medicaid, Medicare, SSI, Temporary Assistance for Needy Families, Child Welfare Services, Maternal & Child Health, the Social Services Block Grant, the Independent Living Program, and more. Therefore, the Committee may choose to draft a bill that cuts any of these programs and this bill could be passed with only a simple majority (51 Senators, or 50 Senators plus the Vice President) in the Senate rather than the 60 votes that are usually needed.
     
  2. Loss of Revenue that Sets the Stage for Cuts to Essential Programs. The Senate Finance Committee and House Ways and Means Committees could also choose to draft bills that only contain tax cuts. As noted earlier, budget rules allow for tax cuts that could increase the federal deficit by up to $1.5 trillion. Many members of Congress who favor tax cuts also favor cuts to programs such as Medicaid and Medicare. The Arc is concerned that passing a large tax reform bill that increases the deficit will make it easy to justify spending cuts down the road.
     
  3. What Happens with Tax Breaks.

    Tax Expenditures that Benefit
    People with Disabilities:

    • Standard deduction for people who are blind
    • Architectural and Transportation Barrier Removal Deduction
    • Disabled Access Credit
    • Work Opportunity Tax Credit
    • Impairment-Related Work Expense Deduction
    • The Low-Income Housing Tax Credit
    • Achieving a Better Life (ABLE) Tax Advantaged Savings Accounts

    For many years, supporters of tax cuts have called for the elimination of certain tax expenditures, also called tax breaks. If certain tax breaks are eliminated, the argument goes, then tax rates can be lowered for most people. In other words, getting rid of some tax breaks can pay for the desired tax cuts. However, not all tax breaks are alike. In fact, there are numerous tax expenditures, which come in the form of credits, deductions, exclusions, exemptions, preferential rates, or deferrals of tax liability. These tax expenditures presently total $1.5 trillion. The Arc will advocate to maintain expenditures that benefit people with disabilities and their families and oppose the elimination of those that only affect the most prosperous.Additionally, The Arc will work to ensure that tax provisions that could be harmful to people with disabilities are not included. For instance, we oppose education tax credits that reduce federal revenues in order to subsidize education in private schools that are not bound by the Individuals with Disabilities Education Act (IDEA) to provide needed services.

  4. US MapBasic Fairness. We expect that changes to the tax code should primarily benefit the majority of people living in the U.S., namely those with low and middle incomes. Public opinion polls show that sentiment is shared broadly. 62% of Americans actually favor increasing taxes on the wealthy, according to the most recent Wall Street Journal poll. However, this does not appear to the case in the tax reform framework, with families in the lower rungs showing only slight gains. The top 1 percent of households, however, are projected to receive 80 percent of the tax cuts by 2027. Click on the map at right to see average tax changes by income group in each state under the proposed framework.
     
  5. Mainstream Economics – Real Numbers and Real Issues. Tax cuts should be based on generally accepted economic theory and methodology. The Arc is concerned that controversial methods, such as dynamic scoring, will be used to overstate the economic benefits of enacting tax cuts. We also know from recent and historic examples that tax cuts have often not yielded promised results and have instead resulted in increased deficts and harmful programs cuts. The Kansas tax cuts provide a cautionary tale.
     

For more information, see:

Congress Must Reauthorize CHIP Now with Bipartisan Support for Funding

The Arc supports the House of Representatives’ bipartisan policy agreement to extend the funding for the Children’s Health Insurance Program (CHIP). CHIP is critical to providing health insurance to over 9 million children in the United States and has helped to reduce the uninsured population of children to historic low levels. It is urgent that Congress act to extend the funding for CHIP before states exhaust current funding. If the program expires, states will be forced to send notifications to families about pending loss of health insurance coverage for their children. These notifications and the potential loss of health coverage will create anxiety and concern among families who depend on CHIP for affordable health insurance coverage.

The Arc is concerned that the House is preparing to move forward with bipartisan agreement on the policy but strong disagreement on provisions for how the bill will be paid for. On principle, The Arc does not support provisions that pay for bills that hurt Medicaid or Medicare beneficiaries or beneficiaries of other important programs when extending equally critical programs. We urge the House of Representatives to continue to seek provisions with bipartisan support to pay for the CHIP funding extension. It is critical that Congress act to maintain this program and ensure that children continue to have access to the health insurance they depend on.

Health Care Open Enrollment

2018 Open Enrollment:

November 1, 2017
Open enrollment begins

December 15, 2017
Open enrollment ends

January 1, 2018
Coverage begins

If you’re uninsured or looking for more affordable health insurance, the open enrollment period is the time to visit healthcare.gov or your state’s marketplace or health insurance exchange. During open enrollment, private health insurance options can be reviewed and coverage can be purchased. People with low and moderate incomes may be able to get financial help to pay for health insurance coverage. Assistance to pay for premiums and other cost-sharing may be available for individuals and families, depending on which plan is purchased. If you get health insurance through your employer, Medicaid or Medicare, you are not eligible for this assistance.

You can also sign up for insurance outside of the open enrollment period, under certain circumstances such as losing your job, getting married, divorced or having a baby. You may enroll in Medicaid and the Children’s Health Insurance Program (CHIP) at any time, year around.

Do all states have the same open enrollment dates?

No. Some states have a longer enrollment periods. States with different ones are listed below:

California: Nov. 1, 2017 – Jan. 31, 2018

Colorado: Nov. 1, 2017 – Jan. 12, 2018

Connecticut: Nov. 1, 2017 – Dec. 22, 2017

DC: Nov. 1, 2017 — Jan. 31, 2018

Massachusetts: Nov. 1, 2017 – Jan. 23, 2018

Minnesota: Nov. 1, 2017 – Jan. 14, 2018

New York: Nov. 1, 2017 — Jan. 31, 2018

Rhode Island: Nov. 1, 2017 – Dec. 31, 2017

Washington: Nov. 1, 2017 — Jan. 15, 2018

 

If you have a disability or a health condition, details or possible changes matter. Ask:

  • 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 or limits 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?

I already have health insurance through the Marketplace. Do I need to do something?

It is important to update your income and household information in the Marketplace to make sure you get the assistance that is available.  

  • This is also a good time to check your health insurance coverage and see if it still meets your healthcare needs.
  • If a new plan does not cover your providers or services, seek more information about transition rights.
  • You should carefully read all health insurance notices and updates.
  • If your income has increased, updating your information with the Marketplace will help avoid paying penalties.

I and/or my family members are uninsured, can we sign up?

Most individuals will be able to get health insurance coverage regardless of pre-existing health conditions or prior denial of coverage. Interested individuals can go online, enter information and review insurance options. Information on monthly premiums, deductible costs, doctors, hospitals and which drugs are covered by a plan should be available. Enrollment is limited to individuals who live in the United States, are U.S. citizens, nationals, or non-citizens who are lawfully present, and not currently incarcerated. If you have not signed up for an insurance plan, it is important to note that you may be subject to a fee for not having health care coverage.

Where can I go to get help?

Purchasing health insurance can be complicated. If you or your family member needs assistance with understanding the options, healthcare.gov can help. Each state has health insurance “navigators” to assist individuals with enrollment in health insurance plans. Individual health plan information should be available in late October 2017 on the website.

Website: www.healthcare.gov
Phone: 1-800-318-2596 (Available 24/7 with access to 150 languages)
TTY: 1-855-889-4325
In-Person Assistance Resources: localhelp.healthcare.gov

The Arc Responds to Bipartisan Health Care Legislation

Washington, DC – The Arc released the following statement in response to Senator Lamar Alexander (R-TN) and Senator Patty Murray (D-WA) releasing bipartisan health care legislation:

“The Arc commends Senators Lamar Alexander and Patty Murray for their bipartisan work on health care. Together they have developed legislation that continues the cost-sharing reduction payments that help low income people access affordable health insurance for two years. Stopping these payments raises concerns about insurers significantly raising premiums or dropping out of the market place. A short-term extension will help stabilize the market place.

“The Arc encourages Congress to continue to work in a bipartisan manner on health care issues. People’s lives are at stake and we need a solution that supports all citizens including people with intellectual and developmental disabilities and those with significant medical needs. We appreciate the leadership shown by Chairman Alexander and Ranking Member Murray of the Senate Health, Education, Labor and Pensions Committee,” said Peter V. Berns, CEO of The Arc.

The agreement that Senators Alexander and Murray announced would also partially restore federal funding to the Department of Health and Human Services for consumer outreach and education and enrollment assistance. These services, which were cut earlier this year, help people enroll and understand the different plan options available. Restoring funding for these programs will be critical to ensuring the expansion of health care coverage and to reduce the number of uninsured people.

The bill also makes changes to the Section 1332 state waiver process. Section 1332 was included in the Affordable Care Act (ACA) to give states the option to experiment with other health coverage models as long as they maintain access to high quality, affordable health care, and maintain the consumer protections in the ACA. The proposal would keep the consumer protections in Section 1332 but streamlines the administration of the waiver.

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.

President Trump Moves to Destabilize the Affordable Care Act (ACA)

The Arc is deeply disappointed by two recent initiatives of the Trump Administration regarding the Affordable Care Act (ACA). The first is the Administration’s decision to end cost sharing reduction (CSR) payments, a decision which will be devastating to the health insurance marketplace created by the ACA. CSRs were included in the ACA to help ensure that people earning less than 250% of the federal poverty level ($60,750 for a family of four in 2017) can afford out of pocket expenses such as deductibles and co-pays. The money is provided to the insurance companies to help them offer the required affordable coverage. CSRs are different from the premium tax credits also required by the ACA to help individuals and families afford the premiums. The tax credits are available to people earning up to 400% of the federal poverty level ($97,200 for a family of four in 2017).

Health insurers urged the Trump Administration to continue the payments to help keep premium costs down and to keep health insurers selling in the marketplace. The Congressional Budget Office estimated in August that ending the CSR payments would cost taxpayers $6 billion in 2018 and $21 billion in 2020. This is because the premium tax credits would go up when premiums are raised by insurers to offset the loss of the CSR. This move is consistent with the Trump Administration’s desire to undermine the ACA by driving more insurers out of the marketplace and discouraging people from signing up for coverage.

Last week the President also signed an executive order directing federal agencies to find ways to offer health insurance products that do not comply with the consumer protections in the ACA. These protections include ending pre-existing condition exclusions, ensuring that people with health conditions do not pay more, ensuring health plans cover adequate health care services, and other protections. These changes are particularly critical to people with chronic illness and disabilities who needs these protections to have access to affordable care that meets their needs. Promoting cheap and skimpy plans will hurt people who have more health care needs. It can also draw healthier people to the inadequate plans outside of the marketplace. These changes could make health insurance more expensive in the marketplace.

The executive order also directs agencies to figure out how to allow insurance plans to be sold across state lines. Currently health insurance plans are regulated on the state level. State insurance commissions are responsible for ensuring that the insurance sold in the state is sold by reputable and financially secure companies and meet the insurance requirements in the state. This type of change would bypass the state insurance commissions in addition to allowing plans that do not include the ACA protections.

The executive order does not immediately make these policy changes but directs the agencies to find ways to do so. These policy changes are in addition to the Trump Administration’s decisions to shorten open enrollment, slash advertising about open enrollment, shut down the healthcare.gov website for periods of time during open enrollment, and slash funding for health care navigators who help people with questions. Together these actions create additional barriers to enrollment.

The newest changes in the executive order and relating to the CSRs will depress enrollment, increase costs, and be particularly harmful to people with chronic illness and disabilities. The changes do nothing to improve access to affordable health care. Instead, it is expected that people with pre-existing conditions will be paying more for less in a destabilized health insurance marketplace.

The Arc Responds to President Trump’s Health Care Executive Order “Extremely dangerous for people with disabilities”

Washington, DC – The Arc released the following statement in response to President Trump’s Executive Order Promoting Healthcare Choice and Competition Across the United States

“President Trump, through the new Executive Order “Promoting Healthcare Choice and Competition Across the United States”, is urging his Administration to find ways to circumvent critical protections of the Affordable Care Act including pre-existing condition protections and requirements for adequate health benefits. If the agencies implement this order, it would undermine the health insurance marketplace and drive up the costs of premiums for people with chronic illnesses and disabilities. This is extremely dangerous for people with disabilities who have relied on the Affordable Care Act to receive quality and affordable health care. The Arc vehemently opposes health care policies, like this, that are detrimental to people with intellectual and developmental disabilities.”  said Peter Berns, CEO of The Arc.

Disability Rights Protected Again: The Arc on Senate Not Voting on Graham-Cassidy This Week

Washington, DC – The Arc released the following statement following news that the United States Senate would not hold a vote this week on the Graham-Cassidy-Heller-Johnson proposal. This was the sixth attempt this year by Congress to repeal the Affordable Care Act and cut Medicaid.

“The Graham-Cassidy-Heller-Johnson proposal recycled the same threats to Medicaid we fought back on time and time again this year. It was an unacceptable approach for those who rely on Medicaid for a life in the community. While there won’t be a vote this week, it doesn’t change the fact that the architects of this bill showed a disturbing disregard for the important role Medicaid plays in meeting the needs of their constituents with intellectual and developmental disabilities.

“The victors in this battle are the advocates across the country who made clear that the disability community staunchly opposes legislation that includes per capita caps or block granting of Medicaid. We thank all the advocates who rallied together and would not be ignored when the civil rights of people with disabilities were at stake. We also thank the Members of Congress who joined us in opposing this bill.

“This year, we’ve fought multiple health care proposals that threatened the health and well-being of people with disabilities. While we celebrate this victory, we remain vigilant and ready to oppose future threats to Medicaid put forward by Congress,” 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.