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 October 6, 2016) (unpublished order).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®.

What’s at Stake at the Supreme Court for People with Disabilities? The Arc Reviews Judge Gorsuch’s Record on Disability Rights

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

On January 31, 2017, President Donald Trump nominated Judge Neil Gorsuch of the Tenth Circuit Court of Appeals for a seat on the U.S. Supreme Court. Judge Gorsuch’s confirmation hearing before the Senate Judiciary Committee is set for March 20. A close review of Judge Gorsuch’s opinions pertaining to people with disabilities reveals a jurist with an exceptionally narrow view of the protections offered by federal disability rights laws—an approach that has led to deeply troubling results for members of The Arc in the Tenth Circuit’s jurisdiction. While Judge Gorsuch is a staunch proponent of the inherent dignity of all human beings, including those with disabilities, during his tenure on the Tenth Circuit he has not been a champion for robust enforcement of disability rights laws that are so crucial to enabling individuals with disabilities to lead dignified lives in the community, free from discrimination.

In cases involving the Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and the Fair Housing Act in which Judge Gorsuch authored the majority or concurring opinion, he almost always ruled against the plaintiff with a disability. Perhaps the most common thread uniting these opinions is Judge Gorsuch’s strictly textualist approach to interpreting laws. This approach leads him to frequently disregard legislative history and Congressional intent in favor of deciphering the “objective” meaning of the law’s text in a vacuum, ultimately resulting in very narrow interpretations of the protections guaranteed by federal disability rights laws.

For example, in Hwang v. Kansas State University (2014), the plaintiff, a professor who had been employed by the university for 15 years, requested to extend her 6-month medical leave for a finite period. Due to a cancer diagnosis and weakened immune system, she sought to avoid a flu epidemic that arose on campus. When her employer refused to make an exception to its 6-month leave policy, the plaintiff sued, alleging disability discrimination under the Rehabilitation Act. Judge Gorsuch found for the defendant employer on the grounds that, as a matter of law, a leave of more than 6 months was not a reasonable accommodation. In this opinion, Judge Gorsuch demonstrated a troubling view of disability accommodations in the workplace, implying that the plaintiff employee was seeking not to work and should therefore be funneled into the public benefits system rather than the workplace:

Ms. Hwang’s is a…problem other forms of social security aim to address. The Rehabilitation Act seeks to prevent employers from callously denying reasonable accommodations that permit otherwise qualified disabled persons to work—not to turn employers into safety net providers for those who cannot work.

Remarkably, Judge Gorsuch affirmed dismissal of the case prior to fact discovery, thereby precluding the plaintiff from the ability to present evidence. He also failed to engage in the individualized inquiry required in such cases, in conflict with U.S. Supreme Court precedent, guidance from the Equal Employment Opportunity Commission, and four other circuit courts (in addition to a prior conflicting decision within the Tenth Circuit). An amicus brief on behalf of several disability rights advocacy groups requesting a rehearing referred to the decision as “unprecedented.”

Another standout case is Thompson R2-JSchool District v. Luke P. (2008), in which Judge Gorsuch articulated an extraordinarily low standard for educational benefit that is now under review before the U.S. Supreme Court in another case arising from the Tenth Circuit, Endrew F. v. Douglas Cty. Sch. Dist. Re-1. In Luke P., the hearing officer, administrative law judge, and the district court found for the student, noting that the district had failed to provide a free appropriate public education as demonstrated by the student’s inability to generalize the skills he learned at school to settings outside of school. These decisions were based on the notion that this level of minimal progress towards IEP goals was not enough to constitute a meaningful educational benefit under the IDEA. Judge Gorsuch disagreed:

[A] school district is not required to provide every service that would benefit a student if it has found a formula that can reasonably be expected to generate some progress on that student’s IEP goals…Rather, [the IDEA] much more modestly calls for the creation of individualized programs reasonably calculated to enable the student to make some progress towards the goals within that program.

In finding for the school district, Judge Gorsuch rejected the plaintiff’s argument that the purpose of the IDEA, as stated clearly by Congress, was to help students with disabilities achieve more meaningful progress that led to a greater possibility of independent living. Despite legislative history to the contrary, Judge Gorsuch noted that independence was not an outcome-oriented guarantee of the law. In November, along with a large coalition of disability advocates, The Arc submitted an amicus brief before the U.S. Supreme Court challenging this same low standard employed by the Tenth Circuit in the Endrew F. case. In another IDEA case, A.F. v. Espanola Public Schools (2015), where Judge Gorsuch found for the school district, the dissenting judge noted that the outcome “was clearly not the intent of Congress and…harms the interest of the children that IDEA was intended to protect.”

Judge Gorsuch has also demonstrated a narrow view of class actions, a crucial tool for individuals with disabilities to enforce their rights in court. For example, in Shook v. Board of County Commissioners of County of El Pas(2008), Judge Gorsuch affirmed the denial of class certification to a group of plaintiffs alleging that jail conditions for prisoners with psychiatric disabilities violated the Eighth Amendment’s ban against cruel and unusual treatment. In so finding, Judge Gorsuch reasoned that it would be too difficult to craft appropriate systemic relief for the class as a whole given the variety of psychiatric disabilities represented in the class.

These decisions are more than just abstract discussions of legal theories – they have real-life consequences for The Arc’s constituents. In particular, Judge Gorsuch’s effectively pro-school district stance has been devastating for students with disabilities and special education advocates in the Tenth Circuit. Advocates from AdvocacyDenver (a chapter of The Arc), noted that the Luke P. decision was “seismic” for students with disabilities in Colorado, leading school districts to believe that they had a champion in the Tenth Circuit. This dramatically changed their approach to IEP disputes and empowered them to act to the detriment of students with disabilities under the belief that they would almost always prevail in court. Overall, advocates from the chapter noted that the Tenth Circuit offers some of the weakest protections for students with disabilities and their families in the country and that Judge Gorsuch’s decisions on the IDEA have had deeply problematic results for special education advocates and students with disabilities in Colorado.

On the other hand, Judge Gorsuch, like The Arc, is a staunch opponent of physician-assisted suicide. While he has not yet addressed this issue in court, Judge Gorsuch authored a 2006 book, The Future of Assisted Suicide and Euthanasia, in which he notes that: “[a]ll human beings are intrinsically valuable…any line we might draw between human beings for purposes of determining who must live and who may die ultimately seems to devolve into an arbitrary exercise of picking out which particular instrumental capacities one especially likes.” Among other reasons for his opposition, Judge Gorsuch links the practice to the history of societal devaluation of people with disabilities embodied by the eugenics movement, flagging the inherent risk for abuse the system poses for people with disabilities.

Judge Gorsuch’s views on this subject and his recognition of the inherent dignity of people with disabilities reflect an important area of common ground. The question is whether his jurisprudence will ever link this belief in inherent dignity with a robust protection of rights that is so crucial to the ability of people with disabilities to learn, work, and lead dignified lives in the community among their peers. During his tenure on the Tenth Circuit, the answer to this question has largely been no.

More information about Judge Gorsuch’s majority and concurring opinions relating to disability rights can be found here.

The Arc On CBO Score of American Health Care Act “The numbers are in, and they are devastating for people with intellectual and developmental disabilities”

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

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

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

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

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

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

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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.

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

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

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

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

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

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Applauds U.S. Supreme Court Decision Allowing Independent Disability Discrimination Claims Against School Districts

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

The Arc applauds this decision which removes important barriers for students with disabilities seeking redress under the ADA and Section 504. The Arc has long advocated for the rights of students and others with intellectual and developmental disabilities to live their lives free from discrimination and with necessary accommodations, to which they are entitled under federal law. This decision is an important step in ensuring robust enforcement and protection of those rights.

In a major win for students with disabilities and their families, the U.S. Supreme Court issued a unanimous decision authored by Justice Elena Kagan on Wednesday in Fry v. Napoleon Community Schools that allows students to bring lawsuits directly under the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504) without requesting an administrative hearing under the Individuals with Disabilities Education Act (IDEA) when their claim is not related to the adequacy of their education. The IDEA requires schools to provide specialized instruction and related services to eligible students to help them make progress on their educational goals. In contrast, the ADA and Section 504 prohibit discrimination of people with disabilities of all ages, both in and out of schools, in any public facility or federally funded program. This decision eliminates certain roadblocks that have prevented students from seeking relief directly in federal court when their claims involve disability discrimination under the ADA or Section 504, rather than their educational services and supports under the IDEA. Attorneys from The Arc attended oral arguments in this case before the U.S. Supreme Court last October.

Ehlena Fry, the plaintiff in the case, has cerebral palsy and uses a service dog, Wonder, to assist her with daily activities, such as “retrieving dropped items, helping her balance when she uses her walker, opening and closing doors, turning on and off lights, helping her take off her coat, [and] helping her transfer to and from the toilet.” When her parents asked the school to allow Ehlena to use Wonder in her kindergarten classroom, the school refused. Ehlena’s individualized education program (IEP) under the IDEA included use of a human aide, and the school argued that the aide met all of Ehlena’s “physical and academic needs,” rendering Wonder unnecessary. As a result, Ehlena’s parents removed her from the school and filed a disability discrimination complaint under the ADA and Section 504 with the U.S. Department of Education’s Office for Civil Rights (OCR).

OCR investigated and concluded that the school had discriminated against Ehlena by denying her use of her service dog, just as it would be discrimination to require a student who uses a wheelchair or a blind student to be carried or led around by a teacher or aide rather than permitting the student to use a guide dog or a cane. Following OCR’s investigation and findings, the school agreed to allow Ehlena to attend school with Wonder, but the family chose to enroll her in another school for fear of retaliation. The family also filed a lawsuit in federal court against the school system alleging disability discrimination and seeking monetary damages under the ADA and Section 504 for the school’s previous refusal to reasonably accommodate Ehlena’s use of her service animal. The lawsuit was dismissed by both the federal district court and the Sixth Circuit Court of Appeals who concluded that any claims that were educational in nature had to undergo the administrative hearing process in the IDEA before they could be filed in federal court.

In finding in favor of Ehlena and her family, the U.S. Supreme Court stated that students do not have to exhaust the administrative proceedings required in the IDEA when the essence of their claim is not about the IDEA’s free and appropriate public education (FAPE) requirement, as was the case here. The Court’s opinion offered some general guidance on how to identify whether the IDEA’s FAPE requirement is the essence of a lawsuit against a school, distinguishing between a student who uses a wheelchair suing a school for not having an accessible ramp (which is not about FAPE) and a student with a learning disability suing the school for not providing math tutoring (which is about FAPE). A concurring opinion from Justice Samuel Alito, joined by Justice Clarence Thomas, criticized this part of the Court’s guidance as creating confusion for the lower courts. In addition, because the Frys were not claiming that Ehlena was denied a FAPE under the IDEA, the Court explicitly chose not to address the question of whether students must exhaust the IDEA’s administrative hearing process when the complaint does allege a denial of FAPE but the specific remedy being requested is not available under the IDEA, such as monetary damages.

Though the decision in Fry leaves some questions unanswered, it does eliminate certain roadblocks that have prevented students from seeking relief directly in federal court when their claims involve disability discrimination under the ADA or Section 504, rather than their educational services and supports under the IDEA.

The Arc Responds to House Republican Leadership Plans to Repeal the Affordable Care Act and Decimate the Medicaid Program

Washington, DC – The Arc released the following statement following the release of the House Republicans’ new plan to repeal and replace the Affordable Care Act:

“Politicians are being very cavalier with peoples’ lives as they attempt to pay for the repeal of the Affordable Care Act by slashing Medicaid funding for states. Regardless of how this is packaged, it doesn’t change the reality that this proposal will have a dire impact on people with intellectual and developmental disabilities who rely on Medicaid and the Affordable Care Act for their health care, community supports, and as a way to live independently in their communities.

“This proposal suggests paying for the ACA repeal by changing the way Medicaid is funded. Giving states a choice between per capita caps and block grants would be devastating for people with disabilities and would also negatively impact already cash-strapped states. The talking points sugar coat it, but the reality is simple – less money would be available despite the fact the needs of people who rely on Medicaid have not decreased. Inevitably, what we will see is a decline in services for those reliant on Medicaid as the financial burden is passed on to states.

“A per capita cap is a financing tool that would result in significant cuts to Medicaid. As it works today, Federal Medicaid funding is based on the actual costs of providing services to Medicaid beneficiaries. Currently, as costs go up or numbers of people needing services increase, funding grows as well. A per capita cap or block grant would limit the Federal government’s payment to states with a preset formula that does not take into consideration growth in cost or need. The bottom line is that people will lose vital benefits and services that support their basic human right to a life in the community. That is a fact that elected officials need to understand and it is exactly why they must oppose this proposal.

“It is morally reprehensible to use Medicaid to pay for the repeal of the ACA. People who have serious health conditions and disabilities require more than the bare bones coverage being proposed. For those reliant on Medicaid, the ability to access appropriate quality care could mean the difference between life and death.  There is too much at stake for us to stand by while politicians show complete disregard for the needs of low income constituents with disabilities, adults, older Americans, and children.  We oppose the plan on the table and will work with Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

The Republican plan leaves many questions unanswered. It is not addressed whether insurance companies will be able to return to insurance policies that discriminate against people with disabilities and/or pre-existing conditions.  It does not address whether insurance companies will be able to cap health care services or use health status to increase premiums.  It does not address whether the critical health care services such as rehabilitative and habilitative devices and services, prescription drugs, mental health services, maternity coverage, and others will be available in the health plans. These protections, and many other critical provisions in the ACA, helped people with disabilities gain access to affordable and comprehensive health insurance. The meager solutions in the Republican plan that rely on high risk pools and limited tax credits are insufficient to help people with disabilities meet their healthcare needs

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of 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.

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.

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

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

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

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

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

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

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

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

Building the Bridge to Inclusion through Technology

Many day-to-day technology tasks have become so intuitive for many of us that it’s easy to forget life before these clicks and swipes. For people with I/DD, these skills can make a world of difference by building bridges to community participation.

In 2016, through our partnership with Comcast NBCUniversal, six chapters across the country hosted “Learning Labs” to foster digital literacy skills in their constituents. The classes’ content varied between chapters based on individual needs:

The Arc Baltimore (Maryland)
The Arc Baltimore’s labs provided an overview of Assistive Technology and a demonstration of devices and software to address communication, computer access, eating, environmental control, hearing, home safety, memory and cognition, telephone access, recreation, and vision. Stories were shared on how individuals have utilized devices. A certified Assistive Technology Professional worked one-on-one with participants to identify and experiment with tools that would be a good fit for them.

Easter Seals Arc of Northern IN (Indiana)
Easter Seals/The Arc of Northern Indiana hosted an instructional computer lab focusing on life skills, employment, internet safety, and money management. The session was so successful that one participant found a job he was interested during the class. The next day, he submitted an application online for that job at Game Stop and landed an interview.

The Arc of Prince George’s County (Maryland)
The Arc of PG County hosted labs covering topics related to independent living, including eating healthy, resume building, tech tools for reading, grocery shopping, job seeking/applications, money value, and understanding maps. At the conclusion of the event, local companies even pledged to employ more people with I/DD! One participant, Brianna, found a screen reader helpful—it helped her pronounce words correctly in addition to easier reading. She compared it to audible books and thinks it “unleashes the power of spoken words”.

NewStar Services (Illinois)
NewStar’s labs had a strong focus on iPad skills, including skills for independent living like taking pictures, iMovie, iModeling, maps, planning a trip, and setting and using reminders. Three Learning Lab participants, David, April, and Charles, requested additional labs on the Maps app, and were surprised to learn that there are bus stops extremely close to their houses that will help them gain independent access to the community.

The Arc of San Francisco (California)
The Arc of San Francisco’s labs were centered on using technology for independence and employment. Topics covered included internet safety, Microsoft, LinkedIn, online job searching, and the basics of email. One participant, Kristin, was struggling with how to best use LinkedIn. After working on her picture, resume, endorsements and recommendations in the lab, Kristin landed interviews at both Google and LinkedIn!

The Arc of Lane County (Oregon)
Topics on computer basics, including terminology, parts, safety/care, and typing, were covered. They worked in Microsoft Word, Publisher, Powerpoint, and used email and iPads. Most importantly, they learned about internet safety issues like identity theft protection, safe passwords, and digital footprints. “When asked about his favorite part of the class Jason exclaimed, “I was really excited to make my resume and get closer to my dream job”.

Through this simple exposure to the basics of digital technology, participants are building the skills that will support them to become more independent within their communities. We look forward to expanding Learning Labs to more chapters and building the skills to succeed in people across the country!

Celebrating 24 Years of the Family and Medical Leave Act

This week, The Arc celebrates the 24th anniversary of the Family and Medical Leave Act (FMLA). This landmark law ensures that millions of workers don’t have to choose between their job and their own health or the health of a family member. Here are three things that people with intellectual and developmental disabilities and their families need to know about the FMLA:

  1. The FMLA offers much-needed leave for workers (including workers with disabilities) and family caregivers. Qualified workers at companies with 50 or more employees can take up to 12 weeks of unpaid family or medical leave each year. The FMLA specifies allowable uses, notably for a worker to address their own serious health condition, to care for a new baby, and to care for a spouse, child, or parent with a serious health condition.
  2. The FMLA protects against job loss. When a worker returns from FMLA leave, the employer must restore the worker to his or her previous job, or an equivalent job with the same pay and benefits.
  3. The FMLA ensures continued access to health insurance. If a worker has employer-sponsored group health insurance, the employer must continue to cover the worker under the same terms and conditions as if the worker had not taken FMLA leave. If the worker’s health insurance covers a family member, that coverage must also continue.

Family and medical leave has always enjoyed widespread public support – but the FMLA was a hard-won victory. Congress considered bills every year for 8 years before finally approving the FMLA on a bipartisan basis. Getting the FMLA across the finish line was testimony to the power of coalition. Organizations representing women, families, workers, seniors, people of faith, businesses, health professionals, and people with disabilities worked closely together to secure the FMLA.

The voices and views of people with disabilities and their families have always been a core part of that advocacy. In the 1980s and 1990s, groups like The Arc were deeply engaged in coalitions working to enact the FMLA, and people with disabilities and family caregivers shared many compelling stories in Congressional hearings and in the media. More recently, thanks to disability community advocacy, in 2015 the Department of Labor clarified that workers can use FMLA leave to care for a sibling with a serious health condition.

The FMLA was an important first step. But more work remains.

Today, about 40 percent of American workers aren’t covered under the FMLA, and many can’t afford to take unpaid leave. Only 14% of workers have paid family leave to care for a new child or seriously ill loved one. And gaps still exist in how you can use FMLA leave, such as being able to use leave to attend a child’s IEP meeting.

That’s why, as The Arc’s Robin Shaffert recently highlighted, we are joining the call for a robust federal paid family and medical leave program that adheres to a core set of principles. All employees must be able to access paid leave of meaningful length and for the full range of needs established in the FMLA. Families come in many shapes and sizes, so “family” must be inclusively defined. Paid leave must be affordable and cost-effective for workers, employers, and the government. And we must ensure that people who take paid leave do not experience adverse employment consequences as a result.

As President Clinton stated when he signed the FMLA into law on February 5, 1993, “Family and medical leave is a matter of pure common sense and a matter of common decency.” We couldn’t agree more. On the FMLA’s 24th anniversary, we celebrate its success and renew our commitment to a robust and inclusive federal paid family and medical leave program.