The Arc Warns that the Senate Republican Health Care Legislation Continues to Pose a Severe Threat to People with Disabilities

Washington, DC – The Arc released the following statement following the release of the updated Senate Republicans’ health care legislation discussion draft:

“A new draft, new talking points, same devastating impact on people with intellectual and developmental disabilities. It is disheartening to know that Senators were in their districts for the last week, yet the pleas of their constituents with disabilities have been ignored with the latest draft of this legislation. This response to the extensive and impressive outreach from the disability community is an insult to people with disabilities and their families.

“The Better Care Reconciliation Act is an assault on people with disabilities and we implore Senators to do the right thing and oppose this bill. A vote in favor of this bill is a vote against the progress of the disability rights movement and constituents who rely on Medicaid for their independence,” said Peter Berns, CEO of The Arc.

On June 22, 2017, the Senate Budget Committee released a discussion draft of health care reform legislation, the “Better Care Reconciliation Act of 2017” (“Senate bill”). The Congressional Budget Office (CBO) released an analysis of the cost of the bill and the impact on health care coverage. CBO found that at least 22 million fewer individuals would have health care coverage by 2026. CBO also found that the Senate bill cuts Medicaid by $772 billion over 10 years, but the most severe cuts do not begin to take effect until 2025. Starting in 2025, the cuts are billions more than the cuts in the House bill and would increase significantly over time. CBO found that, compared to current law, Medicaid would decrease by 35% in 2036.

The current discussion draft from the Senate did include a woefully inadequate home and community based four-year demonstration program for rural states.  A total of $8 billion is available over four years.  In contrast, the discussion draft retains the $19 billion dollar cut made to the Community First Choice Option which is a program available to any state that chooses the option with no end date.
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.

Advocacy is Working – Turn Up the Heat this July 4th Congressional Recess

By Peter V. Berns, CEO

Peter Berns at the U.S. Capitol with (left to right) Sen. Cory Booker; Janel George, National Women’s Law Center; Rep. John Lewis; Sen. Brian Schatz; and Sen. Kirsten Gillibrand.

This week, I had the immeasurable honor of sitting on the steps of the U.S. Capitol and talking with Senator Cory Booker and Representative John Lewis about our fight to save our health care and access to community living under the Affordable Care Act and Medicaid. Over the course of our discussion, we were joined by Senators Brian Schatz, Kirsten Gillibrand, Chris Murphy, Chris Coons, and Jeff Merkley.

It was an amazing and inspiring evening — even as we feared a looming vote in the Senate on legislation that threatens the health, independence, and lives of millions of Americans with disabilities.

Over the last few weeks, from coast to coast we’ve seen people with disabilities and their allies speaking up and taking action– including chapters of The Arc and their members. Among the many recent highlights from our network:

Chapters of The Arc in VA rallying

Virginia chapters of The Arc joined advocates in Washington, DC for a rally on June 6.

While that Senate vote didn’t happen this week, our fight continues. Senators will travel home for a Fourth of July recess with some hoping to vote on a revised bill when they return. Now is the time to ramp up our advocacy even more – keep up the calls to your Senators.

Attend community events and be visible with your support of Medicaid – showing up matters. July 4th is Independence Day, and Medicaid provides independence for millions of people. Make signs and bring friends and family to parades and other community events. Take pictures and share them on social media to encourage others to get involved to protect Medicaid and stop this dangerous bill. Additionally, some Senators may host public town hall meetings during the recess. Check out this resource listing scheduled town hall meetings across the country (it is regularly updated) and find out if your Senators are hosting one.

As Representative John Lewis said to us on the steps of the U.S. Capitol, “Many of us are called at a time to be witness, witness to the truth. You have to tell the truth and speak truth to power. You have to find a way to get in the way. To get in trouble. Good trouble. Necessary trouble, to change things. So I appeal to each and every one of you to go out and to do your very best. If you fail to act, then history may not be kind to us. We cannot let the American people down.”

We couldn’t agree more.

Please #JoinOurFight and take action over the Fourth of July Congressional recess to #SaveMedicaid.

The Arc Takes to the Air for Autism Acceptance Month

Wings for Autism® event volunteers
Photo Credit – Duncan Moffat

Thank you so much for facilitating the Wings for Autism program which was held in Mobile, AL Saturday. We attended this activity with our daughter who has Down Syndrome. She has never flown. She thrives on rehearsing a situation prior to its occurrence and her participation in this event allowed her to store background knowledge of what to expect when she takes a trip. – Parent from Mobile, AL.

Every April, The Arc joins many other disability rights in the US and around the world in celebrating Autism Acceptance month. It is a time to promote greater understanding of the myriad societal barriers that people on the autism spectrum face on a daily basis and encourage greater inclusion within our communities. For The Arc, April marks one of the busiest and most exciting times for one of its most highly celebrated and recognized national programs: the Wings for Autism®/Wings for All® program.

This year, The Arc of the US worked with local chapters of The Arc, airlines, airports and the Transportation Security Administration (TSA) to bring the Wings for Autism®/Wings for All® program to seven different airports across the country during Autism Acceptance month. Nearly 200 families attended these events, many of whom had no prior air travel experience out of fear that being in an airport or on an aircraft would be too difficult and frightening for their loved one with intellectual and developmental disabilities (I/DD).

WCNC forecaster Larry Sprinkle
Photo Credit – Duncan Moffat

The month began with a festive and historic Wings for Autism® event at Charlotte Douglas International Airport (CLT). The Arc of Mecklenberg County and The Arc of Union/Cabarrus County teamed up with The Arc of the US, Delta Air Lines, TSA an the Doug Flutie Foundation to bring the event to CLT airport for the first time in the program’s history. To honor the occasion, local celebrity and weatherman for WCNC-Charlotte, Larry Sprinkle, was on hand to greet families, take photos and announce the Wings for Autism® flight prior to boarding.

After boarding the plane and visiting the cockpit, participants took their seats for a brief taxi around the runway, which allowed for passengers with disabilities get accustomed to the sensations of a moving plane. As the aircraft came back to the gate, all those on the plane and gate area were surprised with a water cannon salute – an honor reserved only for retiring pilots, inaugural flights for new flight routes, and other rare occasions during which two firefighting rigs spray arcs of water over an arriving or departing flight. This came as a surprise to all families on board, event staff and even several of the flight crew who had never witnessed this unique aviation tradition.

I wanted to say thank you again for you and your organization putting on such a fun, non-stressful event today! We all had such a great experience. We learned so much today and how we can make traveling easier. – Parent from Atlanta, GA

A full flight
Photo Credit – John McHugh/Ocaid Photography

 
We were delighted to take part in South Bend International Airport’s second Wings event. Not only did Wings provide our new officers with valuable experience of working with individuals with intellectual and developmental disabilities, it also allowed them to share in the joy felt by parents and children as they successfully passed through our security checkpoints. – Armand Collins, Transportation Security Manager, TSA.
 

These events have an incredible impact on people with disabilities and their families, and we often get heartfelt notes after the event. One such note read: “I don’t have the words to adequately express my thanks for this evening’s Wings for Autism event. We have been so worried about how our daughter would deal with the plethora of unknowns associated with air travel and you have now made future air travel a reality for us. Too many times, as a parent of a child with ASD, you feel like doors are closed to your child and/or your family. Well, tonight, you gave her wings!”

Representatives from Delta Air Lines, CLT airport and TSA were also amazed and humbled by their Wings experience. “Being able to host a Wings for Autism Event was a very special moment for the Delta team in Charlotte,” said Jill MacDonald, Delta Air Lines. “As airline employees we take air travel for granted and for our team to be able to open up the possibility of flying for the families of children and young adults with autism, that was extremely gratifying. This was an unforgettable experience and one that we look forward to hosting for many years to come.”

The Arc of Mecklenberg and The Arc of Union/Cabarrus were thrilled and look forward to another Wings event in the future. “Wings for Autism was probably the most meaningful and impactful event I have been part of professionally,” said Nancy Hughes, Executive Director, The Arc of Mecklenberg. “Delta, Charlotte Douglas International Airport, and TSA all went above and beyond to make the event amazing for participating children and families. The consensus feedback from families indicated that it was life-changing, because it opened the door to travel that many thought was closed.”

Looking for a Wings event in your city? Keep an eye on our event listing!

Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism® was created to alleviate some of the stress that families who have a child with autism experience when traveling by air. The program also provides TSA agents, airline and airport staff with a unique perspective on the challenges that individuals with autism spectrum disorders and other disabilities face in air travel and much-needed training on how to better meet the needs of individuals with disabilities and their families.

Can People with Disabilities Afford this Tax Cut?

By Annie Acosta, Director of Fiscal and Family Support Policy

May 1, 2017 – Washington, D.C. President Donald Trump released an outline of his tax reform proposal on April 26. In what he calls “the biggest individual and business tax cut in American History,” the President offers a plan than would disproportionately benefit the wealthiest of citizens and substantially add to federal deficits and the debt. Low income Americans, including the disproportionate number with disabilities, would eventually be faced with even greater cuts to critical federal programs to make up for the resulting budget shortfall.

President Trump’s 2017 Tax Reform for Economic Growth and American Jobs

“The Biggest Individual and Business Tax Cut in American History”

Goals for Tax Reform

  • Grow the economy and create millions of jobs
  • Simplify our burdensome tax code
  • Provide tax relief to American families—especially middle-income families
  • Lower the business tax rate from one of the highest in the world to one of the lowest

Individual Reform

  • Tax relief for American families, especially middle-income families:
    1. Reducing the 7 tax brackets to 3 tax brackets for 10%, 25% and 35%
    2. Doubling the standard deduction
    3. Providing tax relief for families with child and dependent care expenses
  • Simplification:
    1. Eliminate targeted tax breaks that mainly benefit the wealthiest taxpayers.
    2. Protect the home ownership and charitable gift tax deductions.
    3. Repeal the Alternative Minimum Tax.
    4. Repeal the death tax.
  • Repeal the 3.8% Obamacare tax that hits small businesses and investment income.

Business Reform

  • 15% business tax rate
  • Territorial tax system to level the playing field for American companies
  • One-time tax on trillions of dollars held overseas
  • Eliminate tax breaks for special interests

Process:
Throughout the month of May, the Trump administration will hold listening sessions with stakeholders to receive their input and will continue working with the House and Senate to develop the details of a plan that provides massive tax relief, creates jobs, and makes America more competitive – and can pass both chambers.

To understand the impact of this tax plan on people with intellectual and developmental disabilities (I/DD) and their families, it is also necessary to look at some of the basic facts about current tax policy. As the leading charitable organization advocating on behalf of people with intellectual and developmental disabilities, The Arc seeks to ensure that federal funding for programs that help our constituents to live meaningful lives in the community is preserved.

Essential federal programs like Medicaid, Social Security, Supplemental Security Income, and the many discretionary programs – like education, housing, and employment – are all funded through tax dollars, whether through individual, corporate, payroll, excise, estate, or other taxes. As stated by former Supreme Court Justice Oliver Wendell Holmes, Jr., “taxes are the price we pay for a civilized society.”

In addressing the impact of the plan, it is necessary to look at the assumptions in the plan’s goals, along with some of the details of the proposed changes:

  • Grow the economy and create millions of jobs is a basic goal and assumption of this plan. However, the argument that tax cuts will be made up for by increased economic activity has long been discredited by leading economists. At most, a small percentage can be recouped. Read more on this from the Committee for a Responsible Federal Budget.
  • Simplify our burdensome tax code. Reducing the current 7 tax brackets to 3 tax brackets (for 10%, 25% and 35%) does little to make taxes any easier to complete. It would simply lower the amount of revenue generated.
  • Provide tax relief to American families—especially middle-income families. The implication that America is a high tax country is only true if the United States is compared to all nations, including the majority that are developing. When compared to other developed nations, the U.S. tax burden is below average. Learn more on comparative income taxes from the Pew Charitable Trusts.
    On average, Americans pay an effective income tax rate of 9.5 percent, according to research by the Tax Policy Center. As shown below, however, the federal tax system is progressive with middle income Americans paying a much lower rate. Those with incomes between $30,000 and $50,000 pay almost no federal taxes, and consequently, would stand to gain very little with the Trump tax cut plan.
  • Lower the business tax rate from one of the highest in the world to one of the lowest. While the top statutory corporate tax rate of 35% in the U.S. (shown right) is, in fact, among the highest, the effective tax rate is much lower. The average effective tax rate – the actual rate paid after deductions and credits – is slightly lower than other developed countries (27.1% versus 27.7%). See Congressional Research Service (CRS) report for more information.

Further, it is important to note that corporate tax contributions have been steadily declining for decades. As shown below, the corporate share of federal tax revenue now only accounts for 11% of federal revenue, down by two-thirds in 60 years.

One of the reasons for this drop is changes in how corporations are operating and being taxed. An increasing number of corporations’ profits are subject to no taxation (foreign profits that stay abroad) or different taxes (income tax in the case of S corporations). S corporations are structured as “pass through” entities. They do not pay the corporate income tax, but rather pass profits through to owners who pay tax under the individual income tax at a lower rate. Over 90% of U.S. businesses do not pay the corporate tax rate.

 

 

President Trump’s plan to allow S corporations to pay the proposed top business rate of 15% instead of the rate they pay under their current individual tax rate (see brackets below) would disproportionately benefit the very wealthy while draining public revenues. Currently, only individual income below $37,950 a year is taxed at 15 percent or less. Under the Trump plan, anyone who makes their income via a pass-through entity would pay the 15% rate no matter how much they made. President Trump owns over 500 such business entities, according to the Trump Organization’s tax counsel.

Not explained in the President’s plan is that it will increase deficits by an additional $3 to 7 trillion over 10 years, according to the nonpartisan Committee for a Responsible Federal Budget . The proposed 60% cut in the corporate tax rate alone would lose $2.4 trillion over 10 years. Such massive cuts to revenues could have substantial impact on all human services funding, including services and supports for people with I/DD.

House and Senate leadership have consistently required that legislation be “paid for” in order to move through the legislative process and the President’s plan does not include viable pay-fors, therefore creating a major conflict if there is any interest in moving it forward. The Arc will remain vigilant in monitoring the impact of the plan if it begins to move legislatively.

For additional resources on federal taxes and the President’s plan see:

The Arc Responds to The House Pulling Vote on The American Health Care Act

Washington, DC – The Arc released the following statement following the House of Representatives pulling the vote on the American Health Care Act (AHCA): 

“We are pleased that this dangerous piece of legislation is not being considered on the House floor. We commend the Members of Congress who stood up for the rights of their constituents with intellectual and developmental disabilities by opposing the American Health Care Act over the last few weeks. This bill showed a callous and dangerous disregard for the wellbeing of people with disabilities and those with complex medical needs.

“We want to acknowledge the amazing advocacy of The Arc’s grassroots advocates across the country who have been fighting tirelessly to protect the Affordable Care Act and Medicaid.  Earlier this week, we had nearly a thousand advocates gathered in Washington, DC to share their stories and show their Members of Congress that this is more than just politics, this is life and death for people with disabilities. The last few weeks gave the disability rights movement an opportunity to show their strength. Collaborating with our colleagues across the disability rights movement, health advocates, and social justice groups was an empowering experience. We remain unified and ready to fight future threats together.

“Our nation leads the world in respecting and valuing the lives of people with disabilities, fighting tirelessly to promote their rights through landmark legislation and programs like the Americans with Disabilities Act, Individuals with Disabilities Education Act, the Social Security Disability Insurance Program, Supplemental Security Income, Medicaid and other important laws. The American Health Care Act had the potential to erase decades of progress if significant changes weren’t made.  We will continue our efforts to change the hearts and minds of those who supported this bill and help them understand that their constituents rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. Those are the Members of Congress we need to reach; we need them to realize what is at stake.  While we are heartened by this victory, we will remain vigilant. We know our work is far from over,” 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.

Urge Congress to Vote No on the American Health Care Act

Urge Congress to Vote No on the American Health Care Act.

The House of Representatives is planning to vote today on the American Health Care Act. The vote is expected to be very close.  Late last night, the House added a change to the American Health Care Act that will repeal the essential health benefits (EHB).  This will make a bad bill even worse.

As it is, the bill is dangerous to people with disabilities.  It cuts $880 billion out of the Medicaid program and uses it to help pay for tax cuts for the wealthy, corporations, and providers. The March 20th Managers Amendment further weakens Medicaid by ending the Medicaid expansion earlier, offering Medicaid block grants to states, and imposing work requirements.

The latest move to ensure that health care plans do not cover these needed services is an attempt by the White House and the House Majority to gain the support of enough Representatives to pass the bill.  There are some in Congress who believe these benefits are too generous and costly, and insurers should have the option to drop them.

The repeal of the essential health benefits also effectively removes the prohibition against annual and lifetime limits on health care coverage.  

Even worse, it will likely make it harder for people with pre-existing conditions to find health care plans that adequately meet their needs.

Here are the essential health benefits you stand to lose if this bill becomes law:

  • Doctor visits and other outpatient care
  • Emergency services
  • Hospitalization
  • Maternity and newborn care
  • Mental health and substance abuse disorder services including behavioral health treatment
  • Prescription drugs
  • Rehabilitative and habilitative services and devices
  • Laboratory services
  • Preventive and wellness services and chronic disease management
  • Pediatric services including oral and vision care

The essential health benefits were designed to ensure that health plans cover basic needs and they have been critically important to people with disabilities and chronic health conditions. From this list, habilitation and rehabilitative services and devices are particularly important. Habilitative services are health care services that help a person keep, learn or improve skills and functioning for daily living. This category includes physical, occupational, and speech therapy, as well as medical equipment such as wheelchairs.

Without a requirement that basic services be included in the health plans, insurers are likely to drop coverage of therapies or medications that would attract people with more health care needs.  Even if people with pre-existing conditions can find adequate plans, it is very unlikely that they would be affordable.  Most of the protections to ensure affordable health care are also repealed.

Urge the Members of the House of Representatives to oppose the American Health Care Act. It is a threat to the health of people with disabilities and chronic health conditions and it is a threat to our decades long, bipartisan work to secure community based services for people with intellectual and developmental disabilities.

The Arc Applauds U.S. Supreme Court Decision in Special Education Case: “The IDEA Demands More”

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel

On Wednesday, in the second major win for students with disabilities and their families before the U.S. Supreme Court this term, the Court issued a unanimous decision in the special education case Endrew F. v. Douglas County School District RE-1. In an opinion authored by Chief Justice John Roberts, the Court clarified the test for determining whether school districts have met their obligation to provide a free appropriate public education (FAPE) to students with disabilities, definitively rejecting the incredibly low standard utilized by the Tenth Circuit in this case. Specifically, the Court held that:

To meet its substantive obligation under the IDEA, a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances…After all, the essential function of an IEP is to set out a plan for pursuing academic and functional advancement…A substantive standard not focused on student progress would do little to remedy the pervasive and tragic academic stagnation that prompted Congress to act.

Significantly, this is the first time the Court has articulated a specific standard of review for educational benefit required for schools to meet their FAPE obligations under the IDEA. In 1982, the Court held in Board of Education of Hendrick Hudson Central School District v. Rowley that the IDEA establishes a substantive right to FAPE for children with disabilities but declined to establish a specific standard for determining when children with disabilities are receiving sufficient educational benefits to satisfy the IDEA. Lower courts have thus interpreted this substantive right in a variety of ways, some applying an incredibly low standard of review as the Tenth Circuit did in this case, while others have established a higher bar and called for a “meaningful benefit” standard.

Here, Drew, a child with autism, was removed from public school in fourth grade by his parents when his behavior began deteriorating and he ceased making academic progress. His IEP repeated the same basic goals from year to year, indicating a lack of progress toward the IEP goals. His parents believed a dramatic change to the IEP was necessary, but the school district continued to present the same IEP without any meaningful changes. Accordingly, Drew’s parents put him in a private school that specialized in educating students with autism and developed a behavioral intervention plan as well as more meaningful and robust academic goals. As a result, Drew began making dramatic progress. Drew’s parents then met again with the school district who presented them with a new IEP that did not incorporate any goals or approaches that would match the level of services he was receiving at the private school.

His parents filed a complaint with the Colorado Department of Education seeking tuition reimbursement for Drew’s private school due to the school district’s failure to provide him with a FAPE since his final IEP was not “reasonably calculated to enable him to receive educational benefits.” The Administrative Law Judge disagreed and the district court and Tenth Circuit affirmed. Citing Rowley and prior Tenth Circuit precedent, the panel noted that it had long interpreted Rowley’s “some educational benefit” requirement to mean that an IEP was adequate as long as it was calculated to confer an educational benefit that is “merely more than de minimis.” “De minimis” is a Latin phrase meaning “so minor as to merit disregard.”

As noted above, the Supreme Court unequivocally rejected this bare bones approach to evaluating educational benefit and articulated a new, higher standard. The Court explained that when a child with a disability is integrated into the regular classroom, the IDEA typically requires providing a level of instruction that is reasonably calculated to permit advancement through the general curriculum. Where that is not a reasonable expectation, this does not mean that the IEP should be stripped of substantive and meaningful standards. Rather, the IEP:

must be appropriately ambitious in light of [the student’s] circumstances, just as advancement from grade to grade is appropriately ambitious for most children in the regular classroom. The goals may differ, but every child should have the chance to meet challenging objectives. (Emphasis added.)

It is important to note that this decision overturns a standard utilized by Judge Neil Gorsuch who just completed his confirmation hearing before the Senate Judiciary Committee following his nomination to the Supreme Court. Last week, The Arc published a review of Judge Gorsuch’s record on disability rights and highlighted his decision in Thompson R2-JSchool District v. Luke P. in which he employed the merely more than de minimis standard that was later used by the Tenth Circuit in the present case. Dr. Jeffrey Perkins, Luke’s father, testified before the Judiciary Committee on Thursday, noting that Judge Gorsuch’s articulated standard for an educational benefit that is “just above meaningless” was “devastating” to the family and “threatened” Luke’s “access to an appropriate education and thus to a meaningful and dignified life.” As Dr. Perkins explained:

Luke will always need support in a world that still seems perplexing and threatening to him. But his quality of life after 13 years of appropriate education is vastly better than it would have been otherwise. He cooks and does household chores. He is able to shop, work, eat and play in the community…His present life would not have been achievable without an appropriate education.

In his 10th Circuit ruling, Judge Gorsuch eviscerated the educational standard guaranteed by the IDEA…Legal philosophy and case law aside, such an interpretation clearly fails the common sense test. Why would Congress pass a law with such a trivial intent?

The Arc, as part of a large coalition of disability advocacy groups, participated in an amicus brief in support of Drew in November and attended oral arguments before the Court in January. While the standard articulated by the Court is not a detailed formula that specifically defines what appropriate progress will look like from case to case, it is unquestionably more demanding than the standard laid out by Judge Gorsuch and various other circuit court judges. In a time when the ability of people with disabilities to live in the community is under threat, the Court’s unequivocal statement that the “IDEA demands more” is a major victory for students with disabilities and their families that should be celebrated.

What are the 5 Worst Things About the ACA Repeal Bill?

Recently the House Energy and Commerce Committee and Ways and Means Committee passed legislation to cut Medicaid and repeal major portions of the Affordable Care Act (ACA). This bill is moving fast, and we expect the House to vote on it this week. Simply stated, this legislation is devastating. Here’s why:

For over 50 years Medicaid has been a Federal/State partnership where the costs were shared between the states and the federal government. Under this cut and cap proposal, the federal government is turning its back on the states and leaving huge funding gaps for the states to fill.
  1. People with disabilities get slammed by Medicaid cuts
    $880 billion would get cut from the Medicaid program over the next decade. This cut comes from 1) changing the financing structure of the program to a per capita cap model, and 2) phasing out the “Medicaid expansion,” which incentivizes states to cover people up to 138% of the federal poverty level (income of $16, 642 per year) for an individual.

    The result is a cost shift to states that would likely force states to choose among options such as:

    1. Cut eligibility. People with disabilities, low income adults, children, pregnant women, and seniors could be cut from the rolls.
    2. Cut services. Current “optional” services such as in home services, assistive technology, transportation, supported employment, and much more could be up for grabs.
    3. Cut quality. If federal Medicaid regulations are lost, it could be cheaper for states to warehouse people with disabilities in institutions rather than provide quality home and community based services.
  1. Millions of Americans will lose health care
    According to the nonpartisan Congressional Budget Office, there will be 24 million more Americans without health insurance by 2026. This includes 14 million fewer people enrolled in Medicaid. This reality contradicts the many assertions from the President and many Members of Congress that no one would lose health care.
  1. Middle class families pay more
    For moderate-income families, the ACHA’s reduction in tax credits could make coverage out of reach. For families with income below 250% of poverty, estimates show that by 2020, when many provisions of the bill kick in, costs would increase by over $9,000.
  1. The tax breaks favor the rich, corporations, and health care providers
    The ACHA repeals many of the tax provisions that are used to help finance the ACA.   Millions of low and moderate income people would lose their health insurance to pay for $600 billion in tax cuts for the rich and the insurance, drug, and medical device industries. This includes $285 billion in taxes for the top 2% of earners and the elimination of the cap that insurance companies can deduct from their taxes for executives making over $500,000 per year.
  1. Prevention Takes a Hit
    The Prevention and Public Health Fund, which provides crucial financial support for public health and other services that assist people with disabilities. would be gone in 2018. According to analysis by the Trust for America’s Health, the U.S. Centers for Disease Control and Prevention would lose 12 percent of its annual budget if the Prevention and Public Health Fund is repealed.

Celebrating the Far Too Often Lost Right to Make Your Own Decisions

During Developmental Disabilities Awareness Month, The Arc celebrates the decision to allow Ryan King, a man with intellectual and/or developmental disabilities (I/DD), to make his own decisions.

According to a Washington Post column, Ryan King is a man in his 30s who was placed under the guardianship of his parents when he turned 18. For over 15 years, Ryan has worked at Safeway (a major grocery store chain in the Washington, DC area) and has been able to manage his own day-to-day needs.  For far too long, families like Ryan King’s, have been told they must put their children under guardianship without educating them on other less restrictive decision-making options. Too often courts have approved petitions for guardianship without first carefully exploring whether less restrictive alternatives could be effective.

Last year, Judge Russell F. Canan of the Superior Court of the District of Columbia, Probate Division empowered Ryan King to make his own decisions. Judge Canan ruled that through the use of supported decision-making Ryan was able to independently “receive and evaluate information effectively” and “communicate decisions.”  The court terminated the guardianship over Ryan King. In re: Ryan Herbert King, 2003 INT 249 (D.C. Super. Ct. October 6, 2016) (unpublished order).

The Arc believes that people with I/DD, such as Ryan King, must be presumed competent to make their own decisions. Through the process of supported decision-making, people with I/DD work with family members, friends, and other trusted advisors to get the support they need to make their own decisions and to build decision-making skills.  Depending on each person’s needs, legal agreements can be put in place to enable supporters to help implement the person’s decisions.  This can include appointing a representative payee or using powers of attorney, health care directives, and supporter agreements.  Simply put, supported decision-making promotes autonomy and should always be explored along with other less restrictive alternatives before guardianship is considered.

The Arc and our Center for Future Planning® are committed to promoting autonomy and expanding the use of decision-making supports. Here are some things we are focusing on:

Information. Families should have access to information about all options for assisting their family member to make decisions over the life course. Schools should not give legal advice to students and families, and should provide students and families with information about less restrictive alternatives to guardianship.

Skill-building. Individuals with I/DD should have access to supports and experiences to learn decision-making skills from an early age and throughout their lifetimes in educational and adult life service systems.

Less Restrictive Alternatives. State laws should require that less restrictive options are tried and found ineffective before guardianship is considered.

Rights. Regardless of their guardianship status, all individuals with I/DD retain their fundamental civil and human rights (such as the right to vote and the right to make decisions related to sexual activity, marriage and divorce, birth control, and sterilization) unless the specific right is explicitly limited by court order.

To explore decision-making options and to get tips on how to build decision-making skills, visit The Arc’s Center for Future Planning®.

Nuts & Bolts of Income Tax for Individuals with Disabilities and Their Families

By Elizabeth L. Gray, CELA, Special Needs Alliance®

As we approach tax season, it is important to understand the different tax credits, deductions, and liabilities affecting individuals with disabilities and their families.  This is a complicated subject. This article provides general information.  If you would like to get advice for your situation, you should consult a professional with knowledge of both taxation and special needs planning.

Claiming a Dependent

The IRS defines an individual with disabilities as someone with a permanent and total disability that results in the inability of that individual to engage in any substantial gainful activity. A qualified physician must certify that the condition has lasted or can be expected to last continuously for 12 months or more, or that the condition can be expected to result in death. Substantial gainful activity is considered the performance of significant duties over a reasonable period of time while working for pay or profit, or in work generally done for pay or profit. Full-time work (or part-time work done at the employer’s convenience) in a competitive work situation for at least the minimum wage conclusively shows that the individual is able to engage in substantial gainful activity.

You can claim an individual with disabilities as a dependent when:

  • they have lived with you for more than half of the tax year;
  • you have provided at least  half of their support for the tax year; and
  • they are your child, stepchild, foster child, or a descendant of these; or
  • your brother, sister, step-sibling, father, mother, grandparent or other direct ancestor of yours.
  • they are not filing a tax return of their own.

Tax Credits and Exemptions

  • Child tax credit – For each “qualifying child” who will be under the age of 17 at the end of the year, you may take up to a $1,000 credit, based on a sliding income scale.
  • Child and dependent care tax credit – This helps to defray the cost of care services needed in order for you and (if you’re married) your spouse to work. Married persons must both work, or one must work while the other is a full-time student, has a disability, or is looking for work (provided that the spouse looking for work has earnings during the year).  There is no income ceiling on this credit, which can equal 20-35 percent of expenses incurred, up to $3,000 for one qualifying individual, and $6,000 for two or more qualifying individuals. People with higher incomes get a smaller credit than those with more modest incomes.
  • Earned income credit – This is available for people who work and have a child meeting the dependent qualifications previously described. The child must be under 19, a full-time student under 24, or have a permanent and total disability
  • Personal exemption for dependent – The maximum allowable for tax year 2016 is $4,050.The dependent’s gross income for the tax year must be less than $4,000.  Gross income does not include income from services the person performs at a sheltered workshop.

Medical Deductions

The following deductions should be considered both by adults claiming a dependent and by individuals with disabilities who are filing for themselves. For most individuals, these medical expenses are deductible only when they exceed 10 percent of the taxpayer’s adjusted gross income. Until tax year 2017, a 7.5 percent threshold applies to filers who are 65 and older. Typical examples include:

  • Unreimbursed health care expense – Must total more than 7.5 percent of adjusted gross income. Remember to include travel expenses to and from medical treatments, certain insurance payments from already-taxed income (i.e., long-term care insurance), uninsured medical treatments (eyeglasses, contact lenses, false teeth, hearing aids), laser vision corrective surgery, and most medically necessary costs prescribed by a doctor. For example, if the doctor prescribes a humidifier for the home to help with chronic breathing problems, the device and the additional electricity costs to operate it, could be partially deductible.  Remember to keep all receipts for any special medical needs.
  • Special schooling, training, or therapy, including medically recommended exercise programs.  This includes amounts paid for meals and transportation.
  • Aides required for the dependent to benefit from his or her education.
  • Diagnostic evaluations.
  • Certain home improvements and/or modifications required as a result of your dependent’s condition.
  • Special medically recommended diets.
  • Conferences and seminars that are medically recommended and that deal specifically with the medical condition the child has, and not just general health and well-being. Unfortunately, this does not include deductions for meals and lodging incurred while attending the conference or seminar.

Considerations When Filing for Yourself

If you receive Supplemental Security Income (SSI) payments, those benefits are not taxable. In addition, the SSI payments do not get included in Social Security benefits.

What about regular Social Security or Railroad Retirement benefits? Part of the amount received may be taxable. Generally, if the only income received during the year was Social Security or Railroad Retirement, then the amount would not be taxable. However, if an individual received income during the year in addition to Social Security or Railroad Retirement, then half of the Social Security benefits plus the other income may be taxable, depending on your filing status (individual, head of household, etc.) and the total.

If you are receiving disability benefits under a disability retirement plan that was funded by your employer, those benefits are considered earned income until you reach your minimum retirement age. However, payments received from a disability insurance policy under which you have paid the premiums are not earned income.

Other considerations include:

  • Impairment-Related Work Expenses deduction – This is for attendant care services necessary for you to maintain employment. Such services qualify as a trade or business expense. This is available only if the you have a physical or mental disability that is a functional limitation to employment or that substantially limits one or more major life activities (i.e., walking, speaking, performing manual tasks, breathing, learning, or working).
  • Elderly and disabled tax credit – Available to every U.S. citizen, who is 65 or older at any time during the tax year. Tax payers who are under 65 may claim the tax credit if they are retired on permanent and total disability under an employer’s plan, or if they receive taxable disability income during the year and do not reach mandatory retirement age by the first day of the tax year.

Special Needs Trusts and ABLE Accounts

Special needs trusts (SNTs) and ABLE accounts are two important financial planning tools that can significantly contribute to an individual’s quality of life. It is important to understand tax liability for each.

Special Needs Trusts

Income generated by a SNT is taxable and trust expenditures are eligible for deductions, but who is liable depends upon the type of trust involved:

  • A third party trust is set up by an individual for the benefit of someone else (for instance, a parent may establish a trust for a child). When the trust is revocable, meaning that the person who created it can make changes, it is considered a grantor trust and taxes are paid by the person who established it. Once the trust becomes irrevocable, it must report any taxable income or gross income of $600 or more in a given tax year. The trust may either pay the tax itself or issue a form facilitating payment by the beneficiary. Issuing the form to the beneficiary may not be a bad thing because trust tax rates are high, while the beneficiary may be in a low-income tax bracket. Given the personal exemption and, in many instances, the standard deduction, no tax payment may be due. Distributions that represent trust income become a tax liability for the beneficiary.
  • First party trusts, created with funds belonging to the beneficiary with disabilities, are automatically considered grantor trusts in most states (in some locations, it may be necessary to add appropriate language to the trust document), so the beneficiary is responsible for taxes.
  • If an SNT is structured as a qualified disability trust, it may be eligible for larger exemptions. In addition to other requirements, the trust must be irrevocable, and the beneficiary must be under 65 when the trust is created.

ABLE Accounts

As a quick reminder, ABLE (Achieving a Better Life Experience Act of 2014) accounts are modeled after the Section 529 savings accounts and enable certain individuals with disabilities to save funds without endangering their eligibility for means-tested government benefits. Contributions to an ABLE account are not tax-deductible and are made with after-tax dollars. However, ABLE account earnings grow tax-free unless distributions in a given tax year are not made for the designated beneficiary’s qualified disability expenses. Qualified disability expenses consist of a wide range of expenditures: education, housing, transportation, employment training and support, assistive technology and personal support services, health prevention and wellness, and more. In addition, distributions for qualified disability expenses are not considered income.

This overview is not intended as tax advice. Individuals with disabilities and their families should consult a tax professional about their specific circumstances.

 

The Special Needs Alliance (SNA)® is a national non-profit comprised of attorneys who assist individuals with special needs, their families, and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.