Despite being more than 500 pages long, the Coronavirus Aid, Relief, and Economic Security (CARES) Act contains little relief specifically targeted to support people with disabilities, disability advocates assert. And one provision in the bill could actually jeopardize the rights of special education students during the pandemic.
“This is an unprecedented crisis for everyone, and everyone includes people with disabilities and their families,” Peter Berns, CEO of The Arc, said in a statement. “While this bill does provide some important support in this pandemic, there are huge risks facing people with disabilities, their families, and the direct support professional workforce that were largely ignored in this response.”
On the plus side, the $2.2 trillion stimulus bill entitles most low- to moderate-income people to a one-time $1,200 stimulus payment, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) recipients (although SSI recipients may have difficulty getting their checks). Unemployment insurance has also been expanded significantly and businesses will be eligible to apply for loans incentivizing them to avoid firing workers.
However, despite extensive advocacy from disability rights groups, the bill includes no new money for Medicaid-funded home and community based services. These programs are critical to keep the elderly and disabled from having to enter institutions like nursing homes, which continue to be a primary source of COVID-19 outbreaks.
Disability advocates, however, did receive a key temporary victory with a funding extension through November for the Money Follows the Person program, the federal government’s largest grant program for helping states transfer people with disabilities from institutions into independent living arrangements.
The Department of Housing and Urban Development (HUD) has also received $12 billion in funding that could potentially assist people with disabilities, many of whom live in units subsidized by HUD, such as Section 8 housing. Landlords participating in these programs were ordered to suspend evictions.
The special education community has particular concerns as well. Under the bill, Department of Education Secretary Betsy DeVos has 30 days to submit recommendations to Congress to waive certain requirements under the Individuals with Disabilities Education Act (IDEA) during the COVID-19 pandemic. This law, passed in 1975, affords nearly seven million students the right to individualized instruction and other support services. With schools shifting instruction online during the pandemic, DeVos could relieve school districts of their obligation to meet the special education needs of students with disabilities. However, unlike the case with earlier versions of the bill, DeVos would need to obtain congressional approval before issuing any such waivers, which would be unprecedented in the IDEA’s 45-year history.
Click here to read the full bill.
As hospitals around the country brace for an expected surge of patients infected with the COVID-19 coronavirus, fears have been raised that health care providers will begin rationing treatment, with lethal consequences for people with disabilities.
Reacting to protocols to ration care adopted by Washington State and Alabama, advocacy groups filed strongly worded complaints. In response, the federal government has issued a bulletin warning health care facilities not to discriminate against people with disabilities when making treatment decisions during the COVID-19 health care emergency.
Washington State, the first state slammed by the pandemic, released a plan March 16 to guide hospitals on treatment decisions if, as expected, they run short of ventilators and other life-saving medical equipment. The plan suggests that when allocating resources, hospitals should rely on a “utilitarian framework” and consider, for example, a patient’s "baseline functional status” and “loss of reserves in energy, physical ability, cognition and general health.”
In a March 20 letter to the U.S. Department of Health and Human Services (HHS), the Consortium for Citizens with Disabilities wrote, “The lives of people with disabilities are equally valuable to those without disabilities, and healthcare decisions based on devaluing the lives of people with disabilities are discriminatory.”
Three advocacy groups -- Disability Rights Washington (DRW), the Arc of the United States, and Self Advocates in Leadership -- filed a federal complaint with HHS’ Office of Civil Rights (OCR) on March 23. They alleged the Washington State plan was created without input from the disability rights community and violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Affordable Care Act’s disability discrimination provisions.
The groups argued that the language in the plan, particularly without any guidance on federal anti-discrimination laws, will be interpreted to permit medical professionals to deny services to people solely based on their disabilities—without any individualized assessment as to how these patients, many of whom are already among society’s most vulnerable to COVID-19, will survive treatments for the coronavirus.
Even if disability discrimination is not overt, the advocacy groups worried that medical professionals will ration services based on outdated stereotypes of disabilities or other factors, such as a person’s need for subsequent accommodations or long-term survival prospects, which have no bearing on a patient’s immediate ability to survive the pandemic and legally cannot be considered.
“We will not sit by as members of our community are left for dead,” DRW Director of Advocacy David R. Carlson said in a news release. “We stand up for those with preexisting disabilities and those with newly acquired disabilities who are impacted by COVID-19. We implore OCR to rein in and provide urgently needed guidance to the health care professionals who are prepared to relegate members of our community to die.”
Meanwhile, the Alabama Disabilities Advocacy Program filed a separate complaint to OCR on March 24. Alabama’s emergency plan, if it goes into effect, explicitly orders hospitals to “not offer mechanical ventilator support for patients” with “severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury.”
Both complaints urged the federal government to “act swiftly” to investigate and issue nationwide anti-discrimination protocols.
The concerns were evidently heard. On March 28 the OCR issued its bulletin reminding health care providers to "keep in mind their obligations under laws and regulations that prohibit discrimination" against those with disabilities, and OCR director Roger Severino announced his office was opening an investigation to ensure state rationing plans are fully compliant with civil rights law.
“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” Severino said in the bulletin. “HHS is committed to leaving no one behind during an emergency, and helping health care providers meet that goal.” “Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.” Severino added.
For more information on disability discrimination in medical decision-making, click here to read DRW’s 2012 report, “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights,” and click here to read the NCD’s recent “Bioethics and Disability Report Series.”
Just before the end of 2019, Congress passed and the President signed a spending bill that includes significant changes to retirement savings accounts. Known as the Setting Every Community Up for Retirement Enhancement (SECURE) Act, this legislation changes rules around retirement plans in several key ways. Families with special needs members should pay close attention, as these changes will have an impact on their estate planning.
The biggest change eliminates “stretch” IRAs in most cases. To understand the change’s importance, a little background is needed. IRAs are personal savings plans that allow you to set aside money for retirement and get a tax deduction for doing so. Earnings in a traditional IRA generally are not taxed until distributed to you. Any amount remaining in an IRA upon death can be paid to a beneficiary or beneficiaries, but the beneficiary is required to take a certain amount of money out of the account each year and pay taxes on it, called “required minimum distributions.”
Under the previous law, if you named anyone other than a spouse as the beneficiary of your IRA, the beneficiary could choose to take distributions over his or her lifetime and pass any remaining funds onto future generations (this was called the “stretch” option). The required minimum distributions were calculated based on the beneficiary’s life expectancy, so the younger the beneficiary, the smaller the annual distributions and the longer the inherited account money could be stretched. This allowed the money remaining in the account to grow tax-deferred over the course of the beneficiary’s life and to be passed on to his own heirs.
The SECURE Act requires most beneficiaries of an IRA to withdraw all the money—and pay the applicable income taxes—from the IRA within 10 years of the IRA holder’s death. In many cases, these withdrawals will take place during the beneficiary’s highest tax years, meaning that the elimination of the stretch IRA is effectively a tax increase on many Americans. This provision applies to those who inherit IRAs starting on January 1, 2020.
An Exception for Beneficiaries with Special Needs
The SECURE Act makes exceptions for IRA beneficiaries who are considered disabled according to the IRS. These individuals can receive the funds in the form of required minimum distributions based on their life expectancy rather than within 10 years. Also excluded from the 10-year rule are beneficiaries who are considered chronically ill or who are less than 10 years younger than the account owner.
But what happens if an IRA owner wants to designate as the beneficiary a person with a disability who is also the beneficiary of a special needs trust (SNT)? The new law states that the IRA owner can designate an SNT as the beneficiary, and the trustee can use the required minimum distributions to pay for the care and support of the person with special needs. The way to set this up is through what’s known as a “see-through” trust.
On the IRA owner’s death, all the remaining money in the IRA goes into this trust and is distributed by the trustee according to certain structures and rules. The deferred taxes are due when the money is withdrawn from the trust in the form of required minimum distributions. If the beneficiary is a person with special needs (and certified as such by the IRS at the time of the IRA account owner’s death), distributions would be paid out over the beneficiary’s life (rather than within 10 years per the new rules in the SECURE Act).
Note that there are two types of see-through trusts: a conduit trust, in which the money is distributed to the primary beneficiary immediately, and an accumulation trust, in which the money is distributed over time. Both are irrevocable trusts, and both must be permissible under applicable state laws. Accumulation trusts work well for special needs beneficiaries because they can also receive government benefits for their care and support.
Other Beneficiaries Who Do Not Have Disabilities
Planning gets even more complicated if there are multiple IRA beneficiaries (siblings and grandchildren, for example). The trust will only be exempt from the 10-year rule if the individual with special needs is the only beneficiary of the trust during her life. If the trust also permits distributions to a spouse or children, it won't qualify and the IRA will have to be completely withdrawn within 10 years. The best solution may be to establish a see-through accumulation trust for the special needs relative, and set up a separate trust for other heirs.
In light of the new rules, consult with your special needs planner to review the language in your special needs trust (if you have one). You want to be sure that your retirement assets will be distributed in a way that best protects the money you have set aside for your loved ones.
For more on the SECURE Act, click here.
The Department of Health and Human Services (HHS) will now give states the option to obtain a portion of their federal Medicaid funding via so-called "block grants." This potentially dramatic change is billed as a way to improve state flexibility in running Medicaid programs. Although beneficiaries with disabilities should not be directly affected, the change could result in significant service cuts for millions of adults who secured Medicaid coverage through the Affordable Care Act.
Since its launch in 1965, Medicaid has operated as an open-ended entitlement program, meaning it does not include any pre-set funding limits. It is a joint partnership between the federal government and the states: Each state runs its own Medicaid program with the help of matching funds from the federal government.
The Trump administration has been exploring options for block-granting Medicaid since last March. A block grant funding structure would end the open-ended nature of Medicaid’s federal-state partnership. Instead, states that choose the block grant arrangement would receive a pre-set amount of money in exchange for increased flexibility in how they administer their programs.
The question of what increased program flexibility would look like is central to all debates surrounding block grants. Advocates of block grants—from the Reagan administration to former House Speaker Paul Ryan—have argued that block-granting is necessary to ensure the program's long-term funding stability. Disability rights advocates, among other groups, fear it is just a back-door way to slash benefits.
Announced on January 30, 2020, the new HHS plan, dubbed "Healthy Adult Opportunity," would allow states to apply for waivers to cover healthy adults under age 65 using a block grant. This means that the states most likely to apply for the waivers are those that have not expanded Medicaid under the Affordable Care Act but may now do so given the increased flexibility in how to design their program, or those that have expanded Medicaid but wish to reduce costs.
But funds designated to pay for services for children, pregnant women, and people with disabilities could not be block-granted. Likewise, states cannot block grant services that are required under the Medicaid statute, such as emergency and hospital services. The Affordable Care Act—specifically its much-publicized 10 essential health benefits provision—significantly expanded this list of required services.
On the other hand, states have significant discretion when choosing to fund other services, for example, various prescription drugs and dental care. States that opt for a block-grant funding structure would likely impose cuts to these services. States that choose to block grant could also impose higher premiums and co-pays than those currently allowed under Medicaid, and as well as work requirements for beneficiaries, an effort that has largely been stymied in the courts. Moreover, if enrollment in Medicaid dramatically increases due to a health crisis or a recession, states that received a pre-set amount of funding may not have enough money to cover everyone, resulting in additional cuts to services.
Opponents of the block grant concept contend it is illegal because only Congress can make such program changes, and litigation against the proposal is almost certain. In addition, it is unlikely that a state could get a waiver before 2021, when there may be a new federal administration.
For more on the administration's block grant guidelines, click here.
A proposal tucked into the Social Security Administration’s (SSA) 2020 budget, released March 18, is raising fears that people applying for government disability benefits will soon have their posts on Facebook, Twitter and other social media networks scrutinized.
Since at least 2014, the SSA’s Office of Inspector General has used social media as a tool for tracking down cases of suspected fraud among those receiving Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
Until now, however, the SSA has never as a matter of policy reviewed social media accounts to make disability determinations when people are initially applying for SSDI and SSI. That may soon be changing.
"We are evaluating how social media could be used by disability adjudicators in assessing the consistency and supportability of evidence in a claimant's case file," the agency said in the 2020 budget.
For disability rights advocates, the use of social media in disability determinations is problematic on a number of grounds.
To begin with, pictures, videos and other things posted on social media can be taken entirely out of context, providing a misleading view of a person’s physical abilities or other functions.
In addition, advocates argue, the timing of photos may not always be clear from social media posts, raising the possibility that posts could not reflect a person’s abilities at the time they file their disability benefit applications.
Social media monitoring could also further slow the application process, especially for appeals, which regularly take nearly two years.
“The proposal to allow disability adjudicators to monitor or review social media of disability claimants is an unjustified invasion of privacy unlikely to uncover fraud,” Lisa Ekman, director of government affairs at the National Organization of Social Security Claimants’ Representatives, told Reuters.
In fiscal year 2018, the SSA issued about $197 billion in payments to SSDI and SSI recipients, but recovered just $98 million in overpayments from all Social Security programs combined, a small fraction of its spending, according to Reuters. Moreover, not all of that $98 million is necessarily fraud, as some recipients were overpaid simply due to administrative errors.
Click here to watch a video from CBS News about the SSA’s proposal.
If you'd like to discuss this issue with us, please call our office.
For more than half a century, Social Security disability benefits have served as a lifeline for millions of people with special needs. In fact, Social Security offers two distinctly separate disability benefit programs -- each serving nearly 10 million people -- with different purposes, eligibility requirements, and benefit levels.
Social Security Disability Insurance (SSDI) is geared toward people who spent a significant amount of time in the workforce, but are unable to work due to a disability.
To be eligible for SSDI, a person must have been employed for at least 10 years and no longer be able to perform in any “substantial gainful activity” in the workforce as a result of a disability that is expected to last for more than one year or result in death. The Social Security Administration (SSA) typically defines "substantial gainful activity" as being able to earn more than $1,220 monthly (for 2019).
Some adults may also be eligible for SSDI based on their parents’ employment history, provided that the applicant’s disabilities manifested prior to the person turning age 22.
Benefit levels for SSDI are determined based, in part, on the person’s work history and prior earnings. For 2019, the average monthly SSDI payment for individuals is $1,234.
The second program, Supplemental Security Insurance (SSI), is the federal government’s main support program for low-income people, including children, with disabilities.
SSI follows the same functional definition of a person with disabilities as does SSDI, but unlike with SSDI, there is no work history requirement. As a result, SSI benefits are significantly lower than those for SSDI beneficiaries. In 2019, the maximum monthly SSI amount for an individual is $771, although many states add a supplement. In addition, to qualify for SSI and maintain eligibility, recipients may not have more than $2,000 in resources.
For both SSI and SSDI, the Ticket to Work program allows adult recipients to temporarily attempt to rejoin the workforce without automatically seeing their benefits cut off.
The two programs also diverge in terms of the health coverage that accompanies them. SSDI recipients are automatically eligible for Medicare after two years. This is not the case for SSI recipients, although almost all will qualify for Medicaid due to their low-income status.
For both programs, recipients are typically transferred into Social Security’s Old-Age benefits program at age 66. This eligibility age will rise to 67 for people born after 1960.
Some people may also be eligible for Social Security survivor benefits if they are the survivor of a spouse, child or parent who dies.
For more information on SSI and SSDI, click here to read the SSA’s 2019 pamphlet “Understanding the Benefits” or contact us.
ABLE accounts, new tax-free saving accounts for people with disabilities, hold great promise for special needs planning. But among the many questions surrounding ABLE plans is who can open accounts? Only the person with a disability? Parents? Other relatives? Friends?
Created by Congress via the passage of the Achieving a Better Life Experience (ABLE) Act in 2014 and modeled after popular 529 college savings accounts, ABLE accounts allow people with disabilities to save for disability-related expenses while maintaining eligibility for Supplemental Security Income, Medicaid and other government benefits. People can save up to $15,000 annually, up to a maximum $100,000. Nearly every state in the country has passed legislation enabling people with disabilities and their families to open these new savings accounts.
So who is allowed to actually open an account? ABLE accounts can be set up either by the account beneficiary (the person with disabilities), or that person’s parent, legal guardian or another person with power of attorney.
If beneficiaries set up the accounts, however, they must not be a minor, meaning they are age 18 or older, and not have cognitive disabilities that would prevent them from being able to do so.
One limitation on ABLE accounts, however, is the ABLE Act’s strict definition of a qualifying disability. In order to be the beneficiary of an ABLE account, the person’s disability must have begun prior to the age of 26. This excludes many people with disabilities that formed later in life, such as many individuals with chronic conditions or disabilities resulting from car crashes or other incidents. The ABLE Age Adjustment Act, currently before both houses of Congress, would raise the onset-of-disability age from 26 to 46.
If you want to set up or contribute to an ABLE account for yourself or a loved one, contact us today.
Under the federal tax code, certain low- and middle-income workers are eligible for a tax credit, known as the Saver’s Credit, designed to reward them for contributing to their retirement plans.
The new tax law, the Tax Cuts and Jobs Act, provides that people will now be able to benefit from the credit when they contribute to ABLE accounts for people with special needs.
Congress passed the Achieving a Better Life Experience (ABLE) Act in 2014, creating a new savings vehicle for people with disabilities that preserves their eligibility for Medicaid, food stamps, and other means-tested programs while saving for disability related expenses.
Annual contributions to ABLE accounts are capped at $15,000. Of these contributions, a certain portion of the first $2,000 -- $4,000 if the person is married and filing joint taxes -- can be deducted via the Saver’s Credit, depending on the contributor’s income.
With the Saver’s Credit, people can receive a credit equivalent to 50, 20, or 10 percent of their annual contributions to Individual Retirement Accounts (IRAs), including both traditional or Roth IRAs, or employer-sponsored retirement plans -- and now ABLE accounts as well -- up to $2,000.
For 2018, individuals with adjusted gross incomes of less than $28,500, filing as the head of household, can receive a credit for 50 percent of their contributions. So, for example, if a person making $25,000 in adjusted gross income contributes $2,000 toward an ABLE account, she can receive a $1,000 credit on her tax return by claiming the Saver’s Credit. This figure drops to 20 percent if the person’s adjusted gross income is between $28,601 and $30,750, then to 10 percent if the person earns between $30,751 and $47,250. (All income figures are for 2018.) The credit is not available to people making an income above these amounts.
Anyone contributing to an ABLE account could potentially be eligible for the credit, although it is not available to people under age 18 or full-time students, as well as people who are listed as dependents on another person’s tax return.
The Saver’s Credit can be claimed by filling out IRS Form 8880, Credit for Qualified Retirement Savings Contributions. This form will be revised later in 2018 to reflect the new changes.
For more about ABLE accounts, contact us.
Trustees of special needs trusts generally have wide discretion in determining whether to distribute funds to trust beneficiaries. But if the person with disabilities receives Supplemental Security Income (SSI), careful precautions should be taken before any trust funds are used to pay for housing costs.
For the year 2018, federal guidelines set the maximum monthly SSI benefit at $750 for individuals, $1,125 for eligible individuals with an eligible spouse, and $376 for an “essential person,” such as a child. Certain states add a supplement on top of the federal maximum.
The most critical factor in determining whether SSI recipients are eligible for the maximum benefit is their housing arrangement.
People living alone who pay their full rental expenses, including utilities, are eligible for the maximum monthly SSI benefit, assuming they would otherwise be eligible for the maximum. Likewise, where the SSI recipient lives with another person or persons but pays their proportionate share of the rent, the recipient is eligible for the maximum SSI benefit.
However, where a third party pays the rent—be it a parent or a special needs trust—the Social Security Administration (SSA) will cut the maximum federal SSI benefit by one-third, plus $20. For example, if a person receives $750 from SSI, but his special needs trust covers his monthly rental expenses, his benefit will be reduced to $520.
Spouses of SSI beneficiaries and parents of minor children who are SSI beneficiaries are not considered third parties under the applicable SSA rules, and thus shelter payments by them will have no bearing on the SSI recipient’s monthly benefit. However, SSA income rules apply to parents of minor children and spouses and would likely disqualify a person from SSI for that reason.
The rules are identical for other types of housing arrangements, such as where instead of a special needs trust or other third party paying for rent, it covers the SSI recipient’s monthly mortgage payments, co-op fees or, homeowner fees. The same rules apply for monthly utilities payments, such as electricity, gas or water expenses.
Generally, people who are temporarily institutionalized, such as in a hospital, nursing home or assisted living facility, are not eligible for SSI, with some exceptions. A permanent address, however, is not a requirement for continued SSI eligibility. SSI benefits will generally continue where the person is homeless or living in a shelter.
Finally, for SSI recipients who travel, third parties may pay for hotel and food expenses during travel without causing a reduction in the recipient’s benefit.
Payments from special needs trusts can affect a beneficiary's eligibility for Section 8 housing assistance as well. For more information on distributions from special needs trusts and how they will affect a beneficiary’s eligibility for SSI and other government benefits, please contact us.
According to court documents, legendary singer Aretha Franklin did not have a will when she died, despite reportedly having a son with special needs. The lack of a will opens up the intensely private singer’s estate to public scrutiny and unnecessary costs, and means that there are no specific provisions to protect her son.
Franklin, who died in Michigan at age 76, left behind four sons, but no guidance on how to distribute her estimated $80 million estate. The eldest son, Clarence, age 63, has unspecified special needs and requires “financial and other forms of support for his entire life,” according to the entertainment news site TMZ.
When someone dies without a will – called dying “intestate” -- the estate is divided according to state law. Under Michigan law, an unmarried decedent's estate is distributed to his or her children. (Franklin had been married twice but long since divorced.)
Even if the “Queen of Soul” had wanted her estate to go solely to her children, by not having a will or trust, her estate will have to go through a long public probate process, which will likely cost her estate considerable money. If Franklin had created an estate plan that included a will and a trust, she could have avoided probate and kept the details of her financial circumstances private.
But perhaps even more importantly, that estate plan could have made special provisions to ensure that Clarence would receive proper care for the rest of his life. Franklin could have established a special needs trust to preserve any public benefits Clarence may be receiving, or perhaps allocated him a larger share of her estate. She also could have accompanied a financial plan for him with a Memorandum of Intent (also called a “Letter of Intent”) to serve as the primary source of information about her son’s care, providing a roadmap for the courts, guardians, caregivers and others involved in his life.
Clarence could also be harmed by the absence of a will because it opens up an estate to potential challenges that could drag out the probate process. Without a will to clearly state the decedent's intent, litigation resulting from family conflicts often eats into estates.
Finally, Franklin’s estate will be subject to unnecessary estate taxation, leaving even less for Clarence and her other sons. Although she may not have been able to avoid estate tax entirely, there are steps she could have taken to reduce the amount her estate will have to pay.
"I was after her for a number of years to do a trust," attorney Don Wilson, who represented Franklin in entertainment matters for the past 28 years, told the Detroit Free Press. "It would have expedited things and kept them out of probate, and kept things private."
Estate planning is important even if you don't have Aretha Franklin's assets, and it’s doubly crucial if you have a child with special needs as she did. It allows you, while you are still living, to ensure that your property will go to the people you want, in the way you want, and when you want, and to create special protections for the child with special needs before it’s too late. You don’t want your plan for your loved ones to simply be “I Say a Little Prayer.”
Contact us to begin working on your estate plan now.