Legacy Planning Law Group
Weekly Blog

Estate & Elder Law

Protect Your Family. Preserve Your Legacy

If you’re interested in learning more about our process and the solution for you and your family, please book your free 15-minute call with us today!

Special Needs Trusts – What You Need to Know

In general, a trust is created when property or assets are managed by a person or firm for another person’s benefit. The person or entity who manages the trust is known as the “trustee” and is entrusted with the responsibility of making decisions in the best interest of the person who benefits from the trust, known as the beneficiary. Trusts are advantageous because they provide the ability to place conditions on how and when your assets will be distributed when you die, reduce estate and gift taxes, and allow you to skip the lengthy and expensive probate process.

 

Special needs trusts are a class of trusts made specifically for the benefit of those with physical and/or mental disabilities. These differ from the typical trust due to the special conditions that often need to be in place to accommodate the specific needs and lifestyle of the beneficiary of a special needs trust. Another one of the main reasons for having this type of trust is to ensure the beneficiary does not render him/herself ineligible for government benefits due to an increase in assets.

 

Choosing the right trustee for a special needs trust is extremely important and the trustee must be someone you are certain will act in the beneficiary’s best interest after your death. Often, this takes place in the form of a trusted family member who knows the beneficiary and his/her needs. However, if your situation doesn’t allow for this, the court will appoint a third party to manage the trust according to your written wishes.

 

One of the important features of a special needs trust is that the assets in the trust will not be counted toward asset thresholds contained in government programs such as Supplemental Security Income (SSI) and Medicaid. The trustee has complete control over the assets in the trust, instead of the beneficiary. For this reason, government programs such as SSI and Medicaid ignore assets in a trust when determining eligibility. Many people are unaware of this and make the mistake of distributing their assets to a loved one with special needs through a will. This could cause them to exceed the asset limits for SSI and/or Medicaid, thus losing their benefits from these programs.

 

Special needs trust may also be set up to take the proceeds from a legal settlement on behalf of the person with special needs. This is important for the same reason as mentioned earlier, to ensure a windfall does not preclude the beneficiary from receiving government benefits. Also, in the event the person with special needs is the one being sued, the funds in the special needs trust are protected from being paid out in damages.

 

Even if you believe your loved one with special needs will never need government benefits, it is still prudent to consider a special needs trust. Special needs trusts can provide for the unique and specific needs of the beneficiary in ways that other types of trusts cannot. Further, you never know what may happen in the future, especially when you’re no longer around. It may turn out that your loved one needs these government benefits one day and they’ll be glad you provided them this option.

 

Special needs trusts are an excellent vehicle to ensure your loved one with special needs is taken care of in the event of your passing. However, they can be difficult to set up and it is advised that you consult an elder law attorney who will be able to examine your specific situation and make sure your loved one is taken care of for years to come. If you would like to speak with an attorney regarding your situation, or have questions about something you have read, please do not hesitate to contact our office.

 

For More Information on this subject Click here: Guardianship and Conservatorship | Autism Speaks

Special Needs Children turning 18 Years Old -Caregiver.com

Also Read our Previous Blog at :  Estate Planning for Special Needs Family Members

 

 

Family Estate Planning

How Can Estate Planning Address the Troubled Child?

How Can Estate Planning Address the Troubled Child?

Every family has unique challenges when planning for the future, and every family needs to consider its individual beneficiaries in an honest light, even when the view isn’t pretty. Concerns may range from adults with substance abuse problems, an inability to make good decisions, or siblings with worrisome marriages. These situations can be addressed through estate planning documents, says the article “Estate Planning for ‘Black Sheep’ Beneficiaries” from Kiplinger.

How can you prepare your estate, when a problem child has grown into an adult with problems?

You have the option of not dividing your estate equally to beneficiaries.

Disinheriting a beneficiary occurs for a variety of reasons and is more common than you might think. If you have already given one child a down payment on a home, while another has gone through two divorces, you may want to make plans for one child to receive their share of the inheritance through a trust to protect them.

A family member who is disabled may benefit from a more generous inheritance than a successful sibling—although that inheritance must be structured properly, if the disabled person is to continue receiving support from government programs.

No matter the reason for unequal distributions, discuss the reasons for the difference in your estate plan with your family, or if your estate planning attorney advises it, include a discussion of your reasons in a document. This buttresses your plan against any claims against the estate and may prevent hard feelings between siblings.

You can change your mind about your estate plan if your ‘wild child’ gets his life together.

A regular evaluation of your estate plan—every three or four years, or whenever big life events occur—is always recommended. If your wayward child finds his footing and you want to change how he is treated in your estate plan, you can do that.

Your estate plan can include incentives, even after you are gone.

Specific provisions in a trust can be used to reward behavior. An incentive trust sets certain goals that must be met before funds are distributed, from completing college to maintaining employment or even to going through rehabilitation. Many estate plans stagger the distribution of funds, so heirs receive distributions over time, rather than all at once. An example: 1/3 at age 25, 1/2 at age 30 and the balance at age 40. This prevents the beneficiary from squandering all of his inheritance at once. Ideally, his financial skills grow, so he is better equipped to preserve a large sum at age 40.

Trusts are not that complicated, and their administration is not overly difficult.

People think trusts are for the wealthy only or are complicated and expensive. None of that is true. Trusts are excellent tools, considered the “Swiss Army Knife” of estate planning. Your estate planning attorney can craft trusts that will help you control how money flows to heirs, protect a special needs individual, minimize taxes and create a legacy. For families who have one or more “black sheep,” the trust is a perfect tool to protect your loved ones from themselves and their life choices.

Reference: Kiplinger (Dec. 8, 2020) “Estate Planning for ‘Black Sheep’ Beneficiaries”

Read more related articles at:

The Dilemma of Troubled Adult Child Beneficiaries

Estate planning for an Irresponsible Child & Why it is important?

Also, read one of our previous Blogs at:

5 Strategies to Keep Your Heirs From Blowing Their Inheritance

Click here to check out our On Demand Video about Estate Planning.

 

Special Needs Plan

Special Needs Plans Need Regular Reviews to Protect Loved Ones

Special Needs Plans Need Regular Reviews to Protect Loved Ones

Special needs planning is far more detailed than estate planning, although both require regular reviews and updates to be effective. For creating a wholly new plan or reviewing an older plan, one way to start is by writing a biography of a loved one with special needs, recommends the article “Special needs plan should be carefully considered” from The News-Enterprise.

Write down the person’s name, birth date and their age at the time of writing. Include information about favorite activities, closest friends and favorite places. Consider all of the things they like and dislike. Make detailed notes about relationships with family members, including any household pets. Think of it as creating a guide to your loved one for someone who has never met them. This guide will be useful in mapping out a plan that will best suit their needs.

Follow this by writing down what you envision for their future, in three distinct scenarios. A good future, where you are able to care for them, a not-so-great future where they are alive and well, but you are not present in their life and a bad future. You should be as specific as possible. This exercise will provide you with a clear sense of what pitfalls may occur, so you and your estate planning attorney can plan better.

Your plan needs to consider who will become the person’s guardian. You’ll need to list more than one person and put their names in order of preference. Consider the possibility that the first person may not wish to or be able to serve as a guardian and have second and third guardians. Talk to each person to be sure they are willing and able to take on this responsibility.

Next, consider living arrangements. Will your loved one be able to live independently, with regular check ins? Could they live in an accessory apartment with a guardian close at hand? Or would they need to live in a group care facility with an on-site social worker?

A special needs plan usually includes a Special Needs Trust (SNT), with comprehensive details for the trustee. Just as you need multiple guardians, you should also name several trustees. The guardian is responsible for a person and the trustee is responsible for the property.

The question is raised whether a family member or a professional should be the trustee. Having a family member manage the finances is not always the best idea. A professional fiduciary will be able to manage the funds without the emotional ties that could cloud their ability to make good decisions. This is especially important, if the beneficiary has a drug dependency problem, does not have a strong family network or if the estate is large.

Consideration should also be given to having the trustee check in on the beneficiary on a regular basis to ensure that the beneficiary’s needs are being met. The trustee should have permission to make decisions about the use of the trust funds in special circumstances. The trustee will need to be someone who is skilled with managing money and is well-organized and responsible.

Special needs planning is complex, but careful planning will give you the peace of mind of knowing that your loved one will be cared for by people you choose and trust.

Reference: The News Enterprise (Oct. 13, 2020) “Special needs plan should be carefully considered”

Read more related articles at:

Special Needs Plans

Is a Medicare Special Needs Plan (SNP) Right for You?

Also, read one of our previous Blogs at:

Estate Planning For Special Needs Family Members

Click here to check out our Master Class!

special needs parent

Possible Pitfalls for Special Needs Planning for Parents

Possible Pitfalls for Special Needs Planning for Parents

 

Public benefits for disabled individuals include health care, supplemental income, and resources, like day programs and other vital services. Some benefits are based on the individual’s disability status, but others are “needs tested,” where eligibility is determined based on financial resources, as explained in the article “Planning for loved ones with special needs” from NWTimes.com.

Needs testing” is something that parents must address as part of special needs planning, in concert with their own estate planning. This ensures that the individual’s government benefits will continue, while their family has the comfort of knowing that after the parents die, their child may have access to resources to cover additional costs and maintain a quality of life they may not otherwise have.

Families must be very careful to make informed planning decisions, otherwise their loved ones may lose the benefits they rely upon.

A variety of special planning tools may be used, and the importance of skilled help from an elder law estate planning attorney cannot be overstated.

One family received a “re-determination” letter from the Social Security Administration. This is the process whereby the SSA scrutinizes a person’s eligibility for benefits, based on their possible access to other non-governmental resources. Once the process begins, the potential exists for a disabled person to lose benefits or be required to pay back benefits if they were deemed to have wrongfully received them.

In this case, a woman who lived in California, engaged in a periodic phone call with California Medicaid. California is known for aggressively pursuing on-going benefits eligibility. The woman mentioned a trust that had been created as a result of estate planning done by her late father. The brief mention was enough to spark an in-depth review of planning. The SSA requested no less than 15 different items, including estate documents, account history and a review of all disbursements for the last two years.

The process has created a tremendous amount of stress for the woman and for her family. The re-determination will also create expenses, as the attorney who drafted the original trust in Indiana, where the father lived, will need to work with a special needs attorney in California, who is knowledgeable about the process in the state.

Similar to estate planning, the special needs process required by Medicaid and the SSA is a constantly evolving process, and not a “one-and-done” transaction. Special needs and estate planning documents created as recently as three or four years ago should be reviewed.

Reference: NWTimes.com (June 21, 2020) “Planning for loved ones with special needs”

Read other related articles at:

11 Things Special Needs Parents Need to Survive and Thrive

Common Pitfalls When Planning Estates for Families with Special Needs Children

Also, Read one of our previous Blogs at :

Special Needs Guardianship Can Be a Challenge

Click here to check out our Master Class!

 

 

trust

10 Reasons Why You Need A Trust

10 Reasons Why You Need A Trust

 

Christine Fletcher Contributor

If your estate is not subject to estate taxes now, it may be in a few years.

Clients often ask, “Why do I need a trust?” This question comes up even more frequently since Congress passed the Tax Cuts and Jobs Act of 2017, which increased the federal estate tax exemption amount from approximately $5 million per person to $11 million per person or $22 million per couple. Those amounts are adjusted for inflation, so this year the exemption amount is $11.4 million per person.

If you and your spouse have less than $22 million, you may think you can get by with a simple will. Here is why you need more than that.

The tax cuts are temporary. The $11 million federal estate tax exemption amount is scheduled to drop back to the $5 million range in 2026. If your estate is not subject to estate taxes now, it may be in a few years.

Your state matters. Your state may impose its own state estate tax. This is true of Massachusetts which has a $1 million estate tax exemption. If you own real estate in another state, you may be subject to that state’s estate tax laws as well. You should be planning to minimize state estate taxes in all applicable states. (Explore 2019 state estate and inheritance taxes.)

Avoiding probate. If you fund your trust during your lifetime, you will avoid probate. Avoiding probate means your family will not have to go to court to authenticate your will after your death in order to access your assets. This saves time and money.

Planning for incapacity. Another benefit to funding your trust while you are alive is that your successor trustee can access the assets for your benefit if you become incapacitated. If you are in the ICU or a long-term care facility, who will pay your bills and manage your assets? If your trust is funded, the successor trustee can do that. Otherwise, your family may have to go to court to have a conservator appointed to oversee your assets.

 

Limiting children’s access to their inheritance. If you have minor children, you want to make sure their inheritance is overseen by a trustee until they are old enough to manage the monies themselves.

Making lifetime gifts to children. If you want to make a lifetime gift to a child, this is best done through an irrevocable trust to define the child’s access to the funds and to allow you some tax savings.

Protecting beneficiaries from themselves. If a beneficiary has a drug addiction, is a spendthrift or just makes poor choices, having a trustee limits their access to the trust funds.

Divorce happens. If a beneficiary goes through a divorce, a trust could prevent their divorcing spouse from obtaining all or a portion of their monies in a settlement.

Creditor protection. If a beneficiary is in a business or profession that makes her susceptible to lawsuits, having a trust can protect the assets and keep them out of reach by her creditors. Clients with children who are physicians often keep the child’s inheritance in trust to protect from any such judgments.

Preventing bad decisions by a surviving spouse. Do you really want him or her spending your hard-earned money on European vacations with the pool boy or the local cocktail waitress? What if your surviving spouse blows the money on shopping trips leaving your children with nothing? I have seen both situations and they are not pretty. Trusts can prevent these scenarios.

Different trusts serve different purposes. Estate tax savings can be an important part of trust planning, but there are many other facets of trust planning to consider and incorporate into your estate plan.

Read more related articles at :

We Asked Our Experts: Do You Need a Trust?

Understanding the Differences Between a Will and a Trust

Also, read one of our previous Blogs at :

Not a Billionaire? Trusts Can Still Be Beneficial

 

Guardianship

What Should I Know about Guardianship?

What Should I Know about Guardianship?

In a perfect world, a child would be raised by its parents. However, this isn’t always possible, and legally enforceable decisions must sometimes be made to name the person who is best positioned to look after a child.

Guardianship is generally only needed when a person is incapable—whether legally or practically—of looking after their own affairs, says VENTS Magazine in the article “Legal Guardianship 101: What You Need to Know.”

Courts have the power to appoint guardians for adults and children. This is usually a person who is unable to make decisions for themselves.

It may be a disabled person, and guardians are appointed for children when parents consent to it, when their parental rights are removed by a court, or when both parents are dead or permanently incapacitated.

Guardians have duties as to both the protected person and their estate. The duties to the person include providing necessities, education and appropriate medical treatment, where necessary. As far as the estate of the protected person, the duties are to manage any funds properly and to spend them, pursuant to the protected person’s needs. Guardians must prepare an inventory of assets within 60 days of their appointment to the role.

Custody is only granted for children. When appointed, a custodian is given parental rights over the child. Guardianship does not bestow these rights.

A guardian is appointed to take care of a protected person and to safeguard their estate. Biological parents, if alive, keep their parental rights over the child.

To become a guardian, you must file a petition with the court. There will be a hearing on your application. You must present proof (from a doctor, for example) that guardianship is necessary under the circumstances.

Guardianship litigation can eb stressful, but it is frequently necessary, so engage an attorney to help you.

Reference: VENTS Magazine (April 13, 2020) “Legal Guardianship 101: What You Need to Know”

Read some related articles at :

What You Should Know About Guardianship

5 Ways To Know You Need A Guardianship For Mom (Or Dad)

Also, read one of our previous Blogs at : 

How is a Guardianship Determined?

 

 

elderly female mask

How to Talk to a Parent Suffering from Alzheimer’s or Dementia during the Pandemic

If you have a parent living in an assisted living facility or a nursing home, or they’re at home, caregivers need to know how to explain the current coronavirus pandemic in an appropriate and clear manner—and in a way that protects and cares for your own personal health.

Long Island Weekly’s recent article entitled “Caregiving During The Coronavirus” explains that older adults often have more health complications, like heart disease, diabetes and hypertension. As a result, they’re more susceptible to the complications of the coronavirus. Review the recommendations of the Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) for protecting you and your family from exposure.

And although some people suffering from Alzheimer’s or dementia may not fully understand the complexity and severity that the COVID-19 pandemic is having on our communities, they can sense what’s happening. They can read your personal energy and can sense your stress. This may cause them to show more symptoms of anxiety, agitation, cognitive decline and confusion. Communicate as best you can to your parent frequently and clearly about what’s happening. While they may not need to have all the details, let them know that there’s a virus spreading within the community and that we need to wash our hands thoroughly and stay indoors.

For those still being cared for at home, take the necessary precautions as you’d do for yourself. Modify your grocery shopping trips, since stores are adding special senior hours, reschedule unnecessary doctor visits, stock up on needed medications and talk to your doctors about any concerns.

For those in a facility, understand the visitation policies, because many have adjusted their policies to limit or prohibit personal visitation. Ask the administration about visitation and what the care facility is doing to ensure your parent’s care.

Although you might be frustrated that your parent’s facility is limiting or cancelling visitation, remember that the new rules are designed to protect the residents. You may be able to schedule a time to speak with your mother or father on the phone every few days, or you can deliver food or items, like photos albums or other gifts to stay connected. Try to be reasonable and understand that these facilities may be understaffed.

Here are a few key points that may be helpful to get through this crisis:

  • Have a talk with your parent and with the facilities in which they’re living, so they can understand the new policies.
  • Be careful yourself. Take reasonable precautions for yourself and your family member.
  • Avoid public spaces. This includes routine, or non-essential doctor visits, grocery shopping and other visits.
  • Stay upbeat. Know the latest news and guidelines but try to remain calm, because your parent may sense your stress and reflect that.

Be reasonable and understanding and try your best in these uncertain times—for yourself and your loved one.

Reference: Long Island Weekly (April 12, 2020) “Caregiving During The Coronavirus”

Read more related articles at:

Coronavirus (COVID-19): Tips for Dementia Caregivers

Caring for Someone with Alzheimer’s During the COVID-19 Outbreak: 5 Tips

Also read one of our previous blogs at:

Why is an Advance Directive so Important with Dementia?

 

 

family first coronavirus response act

Caregivers May be Eligible for Paid Sick Leave Under Coronavirus Response Act

Caregivers May be Eligible for Paid Sick Leave Under Coronavirus Response Act

The U.S. Department of Labor (DOL) has issued regulations clarifying that people who have to take time off work to care for family members with disabilities may be eligible for the new paid sick leave protections enacted by Congress in the wake of the COVID-19 pandemic.

Until the pandemic, federal protections for employees seeking leave to care for family members or their own health was limited to the Family Medical Leave Act (FMLA), which guarantees certain employees 12 weeks of unpaid leave to care for family members. The Families First Coronavirus Response Act (FFCRA), signed into law March 18, 2020, by President Trump, amends the FMLA to provide two weeks of paid family and sick leave for certain employees. These provisions are temporary, with an expiration scheduled for December 31, 2020.

The new law contains numerous limitations. It exempts employers with more than 500 employees, as well as employers with fewer than 50 employees if the leave protections pose a “substantial risk” to the company. In terms of compensation, workers with COVID-19 are entitled to two weeks of paid sick leave at their regular pay rate. Other workers are entitled to two weeks of paid sick leave at two-thirds of their regular salary, up to a certain maximum, if they have a “qualifying need related to a public health emergency.”

Upon the FFCRA’s passage, disability rights advocates raised concerns about whether the law protected people who needed to temporarily leave a job to care for family members with disabilities whose regular services have been disrupted by the COVID-19 pandemic. DOL regulations implementing the FFCRA, published in the Federal Register on April 6, make clear that the paid leave will cover care for a son or daughter under 18 years of age if the school or place of care has been closed, or the child care provider  is unavailable, due to a public health emergency.

The FFCRA, however, did not expressly define ‘son and daughter.” Would it, as the earlier FMLA does, explicitly define “son and daughter” to not only include children under age 18, but also people of any age who “are incapable of self-care because of a mental or physical disability”?

To the relief of advocates, the implementing regulations explicitly state that employers should interpret the FFCRA and FMLA the same. In other words, family members caring for people with disabilities, even those over age 18, may be eligible for paid leave protections.

“The bill provides unprecedented paid leave benefits to American workers affected by the virus, while ensuring that businesses are reimbursed dollar-for-dollar,” DOL Secretary Eugene Scalia said in a news release.

Although a welcome step, many disability advocates still view the FFCRA as an incomplete set of protections.

“I am concerned that the rule is limited to parental caregivers,” Bethany Lilly, director of income policy at The Arc, told Disability Scoop. “We would like to see other family members included.”

Some states have enacted significantly more expansive sick leave protections than the federal government as a result of the pandemic. In New York State, for example, employers with more than 100 or more employees must provide 14 days of paid sick leave, employers with 10 to 99 employees or more than $1 million in business income must provide five paid sick days, and other employers, while not required to compensate for time off, must nonetheless provide job protections. California has passed a similar law.

Click here to read the full FFCRA regulation.

Read more related articles at:

Families First Coronavirus Response Act: Employee Paid Leave Rights

How the Families First Coronavirus Response Act affects families and their caregivers

Also read one of our Previous Blogs at:

C19 UPDATE: CDC Recommends Care Plans for Both Older Adults and Caregivers

 

Special Needs Trusts

Do Beneficiaries of Special Needs Trusts Have Rights?

Do Beneficiaries of Special Needs Trusts Have Rights?

A special needs trust is set up to provide money for the care and support of the beneficiary with special needs. A trustee is then named or appointed to manage the trust’s assets and act in the best interests of the beneficiary. The duty a trustee owes to a beneficiary is a fiduciary duty which is the highest duty the law creates for one person to another. It is much like the duty a parent owes to a minor child.

What happens, though, if disputes arise? Perhaps the beneficiary wants money for a particular purpose, for example to pay for an alternative form of treatment or therapy, and the trustee refuses to comply, believing such an expense is not within the terms of the trust or would breach the trustee’s fiduciary duty towards the beneficiary.

Even though the terms of the trust have been long established, does the beneficiary have any rights to challenge the trustee or dispute the terms of the trust itself? Special needs trusts are typically irrevocable, which means that the trust’s terms and its assigned beneficiaries cannot be changed without a court’s intervention. Does the named beneficiary of a special needs trust have any rights beyond that? In general terms, yes, thanks to something called the Uniform Trust Code, or UTC. Drawn up in 2000 by the Uniform Law Commission, the UTC is a nonbinding set of guidelines relating to trusts. State legislatures can vote to adopt the UTC into state law, with their own modifications if they so choose, and as of January 2020, 34 states had done so.

Here are five common rights of beneficiaries recommended by the UTC, any of which might come into play in a dispute between the special needs beneficiary and the trustee. These would be brought forward in a court and decided according to state law.

Payment: The special needs beneficiary has the right to distributions from the trust, to pay for her care and support as detailed in the trust’s terms and conditions.

The right to be informed: Beneficiaries are entitled to the trust’s financial information, such as tax returns, annual reports, quarterly earnings statements, and so on. These can be provided on a regular basis or on the beneficiary’s request.

The right to an accounting: If a beneficiary has questions about the trust’s performance or assets, he can request a thorough accounting from the trustee.

Removal and replacement of trustees: If a trustee has demonstrated behavior that violates the purpose of the trust or does not adequately protect the beneficiary’s interests, that trustee can be removed and replaced with someone else.

Termination: If the trust has failed to fulfill its purpose, or is no longer valid, the beneficiary may petition to terminate the trust altogether.

It’s important to keep in mind that these rights are codes, drawn up by the Uniform Law Commission to guide state legislatures. They are only binding if state law puts them into effect. States have made their own modifications to the UTC guidelines or enacted them only selectively. Some, such as California, haven’t adopted them at all, although these states’ laws governing trusts also likely include protections for beneficiaries.

If you are a special needs beneficiary and have questions about your rights, you will first need to find out if your state has adopted the UTC, and to what extent, and if not, what beneficiary rights and protections your state’s law provides. Consult with your special needs planner to get a complete picture of beneficiary rights where you live.

Read more related articles at:

5 Rights That Trust Beneficiaries Have

Can the Beneficiary of a Special Needs Trust Change the Trustee?

Estate Planning for Parents of Children with Autism

Also check out one of our previous blogs at : 

What is a Special Needs Trust?

disability coronavirus

COVID-19 Raises Fears of Health Care Rationing, Disability Discrimination

COVID-19 Raises Fears of Health Care Rationing, Disability Discrimination

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.”

Read more about this at :

Stemming the Risk of Disability Bias During the COVID-19 Pandemic

WHY COVID-19 SPARKS FEARS FOR PEOPLE WITH DISABILITIES

And check out one of our previous Blogs at :

Special Needs Planning

 

 

Join Our eNews