By Michael R. Brower

On this date in legal history, we look back at one of the most momentous U.S. Supreme Court decisions in disability rights history:  Olmstead v. L.C.  On June 22, 1999, Justice Ruth Bader Ginsburg wrote for a 6-3 majority in holding that the unnecessary institutionalization of people with disabilities constituted illegal discrimination under the Americans with Disabilities Act.  In the years since, people with disabilities and their advocates have continued to fight for recognition as full members of society.  The history of Olmstead and the Americans with Disabilities Act informs future impacts on community inclusion advocacy.  Several of Disability Rights New Jersey’s litigation efforts reduced this type of systemic discrimination in New Jersey, but the risk and reality of segregation remains.

For some of us, June 1999 feels like only yesterday, while for others it’s ancient history.  Let me take a second to put that date in context.  The Matrix was still in theaters, Vice President Al Gore had just announced his run for President, and the Columbine High School shooting seized national attention only two months earlier.  The Berlin Wall fell less than 10 years before the Olmstead decision, while I write about it 22 years later.  Most importantly, however, President George H.W. Bush signed the Americans with Disabilities Act into law 9 years earlier, on July 6, 1990.  The bill included a built-in delay so that most elements would not kick in until 1992.  

The Americans with Disabilities Act addressed discrimination against people with disabilities in three main sections, or “titles”.  Title I prohibits disability-based discrimination in the workplace.  Title II prohibits disability discrimination in government programs.  Title III prohibits disability discrimination in businesses and other spaces open to the public.  

The Americans with Disabilities Act shares common themes with other civil rights laws, such as a prohibition on outright discrimination based on membership in the protected class (in this case, having or being perceived to have a disability).  It also requires accessibility accommodations because people with disabilities could still be excluded from full participation, even in the absence of discriminatory intent.  

It’s easy to think about accommodations like ramps to make a building accessible to someone who uses a wheelchair, closed captions for a deaf person, or braille signage for blind people.   For our discussion on Olmstead, the key is the government services provisions under Title II, which prohibits government programs and services from subjecting people with disabilities to discrimination by reason of such disability.  In these types of programs, governments must reasonably modify their policies to ensure they do not cause disability discrimination.

To understand how this law against discrimination created a right to be free from unnecessary institutionalization, we can look at the circumstances of Lois Curtis (the L.C. in the name of the case), Elaine Wilson, and Tommy Olmstead, the principal parties to the law suit.  In 1995, both Lois Curtis and Elaine Wilson, people with mental illness and developmental disabilities, had lived in a psychiatric unit of a state-run hospital in Georgia for several years.  Tommy Olmstead was the state administrator responsible to provide supporting services.  Their doctors agreed they no longer needed treatment there and could return to the community with appropriate supports. Both had lived in the community before and wanted to return, but they could not get the supports they needed, leaving them trapped in a state hospital.  That’s when Lois and Elaine sued Tommy Olmstead.

Remember that in 1995, when the plaintiffs filed suit, the ADA was still very new; it was signed into law in 1990 and went into effect in 1992. Lois and Elaine complained that, because the services they needed to live were only available in an institutional setting, Georgia’s systems of supports illegally segregated people with disabilities from the rest of society.  Like racial segregation, cordoning off separate parts of the state for people based on their disability status felt like illegal state-sponsored segregation.  

After four long years of litigation and appeal, 6 Supreme Court Justices agreed that unnecessary institutionalization isolates people with disabilities from family, social contacts, work, education, and culture in a way that “perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.”  The Court ruled that, because of those effects, states must provide community-based services to people with disabilities when the services are appropriate, the recipient does not oppose community placement, and if the services can be reasonably accommodated considering the public’s resources and the needs of others receiving services from the state.  In other words, unnecessary institutionalization of people with disabilities by failing to provide adequate community supports equates to illegal segregation from society.  

Though the Supreme Court delivered a huge win for Lois and Elaine, Olmstead did not automatically fix decades of institutional bias that permeated service systems for people with developmental disabilities and mental illness across the country.  Disability Rights New Jersey, then recently independent from state government, had been working with state officials to bring the ruling in Olmstead to a reality for people living in state psychiatric hospitals and developmental centers who wanted to leave.  For these people, however, the only option to get the services they needed were still large, state-run, segregated institutions for people with disabilities. After years of post-Olmstead advocacy, Disability Rights NJ found that hundreds of people who no longer needed to live in an institution and who wanted to return to the community had no choice but to remain in those segregated and restrictive settings.  

Disability Rights NJ filed enforcement lawsuits against the state of New Jersey in 2005 and in 2008 based on the decision in Olmstead.  The complaints alleged that New Jersey’s policies illegally segregated people with developmental disabilities and mental illness into large state-run institutions because it failed to provide sufficient community-based supports.  The lawsuits alleged that the shortage of community services created both a backlog of residents stuck in institutions who wanted to live in the community, and people living in family homes who needed more support stuck on a wait list almost indefinitely. The waiting lists placed those individuals at risk of institutionalization if their families could not keep up with their needs.

 In 2009 and 2013, Disability Rights NJ finalized settlement agreements covering those lawsuits that dramatically expanded the availability of community residential placements, diverted unnecessary institutional placements, and required the state to find community placements for eligible developmental center and state psychiatric hospital residents over a settlement monitoring period.  The state met and exceeded its obligations under the settlement agreements, which ended in 2018.  The results of these lawsuits reshaped how people with disabilities receive state-funded services, with a new expectation that community services are now the default, not segregation from the rest of society. 

The fight for full inclusion, though, is far from over.  People with disabilities, especially those with intense behavioral needs, complex medical needs, and co-occurring disabilities still face a system-wide bias towards institutional care in large institutional settings like nursing homes and state-run institutions.  Even when services like private duty nursing, personal care assistance, outpatient mental health treatment, or behavioral supports are available on paper, people who rely on them to live in the community would tell you that chronic understaffing leaves them teetering on the edge of institutionalization, and therefore segregation.  

Only when community-based services are of a quality and quantity to be readily available to support people in in their chosen setting will the anti-segregation mandates of the Americans with Disabilities Act come to full fruition.   The answer to “When can I get out of here?” should always be “Today.”

What is a Psychiatric Advance Directive (PAD), and what does it do?

During a health care emergency, it can be comforting to know that your treatment preferences will be respected. However, if you or a loved one are in a mental health crisis, it might be very difficult to make sound decisions, particularly about treatment. A “Psychiatric Advance Directive” or “PAD” is a legal document that assigns a mental health care representative to make treatment decisions if someone is in a mental health crisis. A PAD can give you peace of mind that you or your loved one will have their health care wishes respected during a mental health crisis. A PAD can even shorten the length of a mental health crisis by giving treating doctors helpful information regarding a person’s mental health history.

Sitting down to draft a PAD is an opportunity for you and your loved ones to discuss mental health care planning and to have open and honest conversations regarding mental health. Also, if you or your loved one already has a PAD that was properly filled out in another state or country, it will be upheld in New Jersey under our State laws.

What can I include in a PAD?

The law that covers PADs was written to promote an individual’s decision-making. So, there are many choices about health care that an individual can include in a PAD. A person can list what kinds of symptoms might be a sign of a mental health crisis. They can explain previous diagnoses and when they were made. They can include programs, medications, and therapies that have worked in the past. They can name a representative, as well as alternate representatives. They can state what a representative can decide, as well as what they cannot decide regarding treatment. They can plan what kind of community-based care they would like to use and if they wish to avoid hospitalization, if possible.

Do I need an attorney to complete a PAD? Do I need to go to court?

You can draft a PAD at home, at no cost, and without the need for an attorney, court hearing, or judicial decision. The law requires that there be one witness present and that they confirm that the individual is of sound mind and is not receiving undue influence. This is another way of saying that the person is not being pressured to sign the PAD. The witness cannot be the same person as the mental health representative.

The representative’s authority begins at a future time, but only if certain future events take place. This shift of decision-making power from an individual to their representative only occurs if that individual is found unable to do so by a mental health professional or if the person agrees to have the authority transferred. (We discuss this in more detail below). The authority ends when the person regains decision-making capacity.

For more information on how to properly complete a PAD, please see our link to resources at the bottom of this article.

How is a PAD different from a guardianship?

You may have heard of or be familiar with the legal concept of “guardianship.” A PAD is not a “guardianship.” A “guardianship” is a kind of legal relationship that occurs when a court determines that an adult lacks capacity and that they need a guardian to be responsible for all or some of their legal decisions, usually for the rest of that person’s life. The guardian is assigned by the court; they are not chosen by the individual. In some cases, the court might even assign a guardian that the person does not know, such as in the case of a professional guardian. In most cases, a guardianship permanently and severely restricts the individual’s rights and decision-making.

Unlike a guardianship, a PAD can be something that transfers decision-making authority to another person only as needed, and the individual can choose who that other person will be, as well as what kind of treatment decisions the representative can or cannot make. A PAD is a very useful tool for an individual who experiences mental health crises only sometimes, such as if the person has a mood disorder. (To help illustrate this, we have provided a narrative case example below).

What is a mental health care representative?

The mental health care representative acts as a kind of “proxy.” The legal term, “proxy,” means that a person has the authority to represent and make decisions for someone else. In this case, the representative would have the authority to make mental health care decisions on behalf of the person who is in crisis, consistent with the instructions set forth in the PAD.

What does the PAD law mean by “decision-making capacity?”

“Decision-making capacity” means a person’s ability to understand the nature and consequences of mental health care decisions. The “mental health care decision” is the decision to accept or refuse any treatment, including whether a particular mental health care professional or facility can provide care. For example, this might include the decision to stop, continue, or start: taking medication; speaking with a therapist; attending psychiatric appointments; and attending group therapy sessions.

The capacity to make such decisions means the person understands the risks, the benefits, and any alternatives, and that they can reach an informed decision. Decision-making capacity is specific to which mental health care decision is being made. In other words, a person might still be able to make certain mental health care decisions.

What activates a mental health care representative’s authority?

The PAD is a binding legal document once it is signed. However, the representative’s authority does not automatically activate at the moment the PAD is signed. It is activated when the person does not have decision-making capacity regarding a certain mental health care decision. Under the PAD law, there are two possibilities for how this is determined. The person gets to choose which scenario will “activate” the PAD when they draft and complete the agreement.

The first possibility is that the PAD states that a mental health professional makes the determination regarding decision-making capacity. This decision needs to be in writing, and it cannot be made by the mental health representative. The opinion must be reviewed by a second mental health professional, who also needs to provide the decision in writing. These findings only activate the mental health care representative’s decision-making power. They have no other legal effect. They cannot be used to determine capacity for any other purpose.

The second possibility is that the individual states in the PAD that they wish to transfer their decision-making power regarding their mental health care to a representative. ­­­

How can I get started with drafting a PAD?

Legal planning tools may seem intimidating, time-consuming, or too expensive, but this is not always the case. Some legal documents, like PADs, can easily be drafted at home with the use of a template. Disability Rights NJ has prepared helpful materials that explain what a PAD is and what can be included in a PAD. Disability Rights NJ has also worked with advocates at the Mental Health Association of New Jersey to draft templates with instructions in English and Spanish. You can find those on our website HERE.

You can also record your PAD into a national registry, which mental health doctors and facilities can search. The registry is managed with the U.S. Living Will registry, so it can be accessed by a health provider even if the person has their mental health emergency outside of the state where they live. The database is secure and confidential. The registered information is not shared or sold. The website to register a PAD can be found here: https://www.state.nj.us/humanservices/dmhas/resources/mental/pad/.

We hope this overview of PADs, who they might benefit, how to use them, and what they do, was helpful. If you have questions about drafting a PAD for yourself or a loved one, please contact Disability Rights NJ, and we would be happy to speak with you further.

2011 brought devasting floods to inland New Jersey with Hurricane Irene, only to be followed by
Superstorm Sandy, the next year, the fourth-worst storm in U. S. history. Though downgraded to
a tropical storm when it made landfall, Sandy was more than 1000 miles wide, three times the
size of a typical hurricane. Its destructive winds leveled many communities along the coastline as
it hit during high tide and merged with high- and low-pressure systems both north and south of
New Jersey, earning it the title of a “superstorm.”

The severity and frequency of storms like Sandy and Irene will continue to increase as the
Earth’s temperatures escalate, icebergs melt, and sea levels rise. New Jersey is especially
vulnerable due to its low-lying coastline along the Atlantic Ocean. According to the American
Meteorological Society, climate change will contribute to more hurricanes in general over the
next 15 years, predicting 32 super-extreme storms with winds exceeding 190 miles per hour. As
a result, residents of New Jersey, particularly the most vulnerable population, such as people
with disabilities, need to be ready for what comes.

What makes a hurricane dangerous?

A hurricane is a storm with violent wind that forms in the tropical waters and can cause
significant damage from heavy rains, violent wind, or life-threatening storm surge. Due to the
lethal nature of the storm, individuals may need to evacuate from their home. Long-standing
power outages following a hurricane may also require evacuation, as was prevalent following
Superstorm Sandy. Individuals with disabilities, especially those with mobility limitations and
those reliant on machines to power life-saving devices may have a more difficult time during
evacuation, as seen in the recent Hurricane Uri that devastated Texas and left the disability
community without aid.

Hurricane season is now upon us, having begun June 1, 2021. Because individuals with
disabilities are especially vulnerable, and the impact of a hurricane can affect all areas of the
state, it is especially important to make a plan for such an emergency and prepare an Emergency
Kit in the event you must evacuate.

How to make an Emergency Plan

• Sign up for emergency alerts on your phone.
• Create a support network of friends, family and neighbors that can help you in the event of an emergency. Include your health providers, medical equipment and assistive technology providers in your plan. Let them know how you will need them. Keep your contact list in a watertight container in your emergency kit. Learn more at www.ready.gov/kit.
• Inform your support network where your emergency supplies are kept. You may want to give someone in your support network a key to your house or apartment.
• Contact your health provider to know the process for getting an extended supply or replacement supply of medication should you need it.
• Contact your local emergency management department and plan ahead for your individual needs. Learn about places to go in the event of evacuation and facilities with supplies you may need. Work with service providers of public transportation or paratransit to identify local or private accessible transportation options. Know the location of shelters that allow service animals if that applies to you.
• Know the location and availability of more than one facility for dialysis. If dialysis is part of a health maintenance plan or other life-sustaining treatment, know where multiple facilities are located.
• Know how to use medical equipment if a power outage occurs.
• Wear medical alert tags or bracelets.
• Make note of the best way to communicate with you in an emergency. If you have a communication disability, determine the best way others can communicate with you and let them know.
• Plan how to evacuate with assistive devices or how to replace equipment if it gets lost or destroyed. Keep model information secure and note who provided it such as Medicaid, Medicare or private insurance. Also note the vendor or dealer.

https://www.fema.gov/press-release/20210318/hurricane-preparedness-persons-disabilities-and-access-and-functional-needs

How to Build an Emergency Kit

An Emergency Kit is a bag of essential supplies that you might need in an emergency, whether
you must evacuate or if you decide to shelter-in place. Below is a list of various types of to-go
bags that an individual might have ready depending on your circumstance.

Carry-on-you Kit

• The carry-on-you kit is for the essential items you need to keep with you at all times. This might include cell phone and charger, flashlight and batteries, current prescription medication, emergency contact and health information.

Grab-and-go Kit

• The grab-and-go kit is a bag, such as a small duffle that you can grab if you have to leave home in a hurry. It has the things you cannot do without and that you can carry and use without help from someone else. This should include any medication you take, your emergency contact list, health provider information, straws, mobility device chargers, a change of clothes, non-perishable meal bars, pet food for service animals, credit card, and cash.

Home Kit

• The home kit includes water, food, straws, first aid supplies, clothing and bedding, tools, emergency supplies, flashlight and batteries, and disability-specific items. It includes all the things you would most likely need if you had to be on your own for days either at home or in an evacuation shelter.

Bedside Kit

• The bedside kit includes items you may need if you are trapped in or near your bed and unable to get to other parts of your home. Some items would be important papers, cell phone, medication, bottled water, straws, flashlight and batteries.

Car Kit

• The car kit includes items you will need if you have to evacuate the area and/or are in or near your vehicle during an emergency. This could include food, water, blankets, cell phone and charger, mobility device chargers, first aid kit, jumper cables and a toolbox.
  https://adata.org/factsheet/emergency-supply

Additional Resources for Planning

There are additional resources and actions you can take to be prepared for a hurricane or
emergency:

Follow state and local Office of Emergency Management (OEM) social media platforms.
If your power goes out, but your cell phone is still working, you’ll be able to check online
for notifications about the pending emergency.

Sign up for Register Ready, New Jersey’s special needs registry for disasters, which
informs emergency management of people with disabilities who will need assistance
during an emergency. Sign up for alerts on your phone through NJ OEM.

Volunteer for core advisory groups in your county or online groups for your area to assist
in planning for emergencies and ensure the voices of people with disabilities are included
in emergency planning.

https://www13.state.nj.us/SpecialNeeds/Signin?ReturnUrl=%2fSpecialNeeds%2f
https://www.facebook.com/READYNEWJERSEY
https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
https://www.fema.gov/assistance/individual/brochure

May 8, 2021

By, Mary Ciccone, Director of Policy

Voting is a fundamental right. We, as a country and as a state, have held elections during all kinds of national and state crises such as the Civil War, the Great Depression, and more recently, Superstorm Sandy. Each crisis brought its own challenges to the voting process, but we have always managed to vote. Last year, voting during a global pandemic created a whole new set of public health concerns for the voters as well as the election officials. To mitigate the risk. Governor Murphy, through executive orders, changed the format of the primary and general election to all vote-by-mail. Due to the efforts of election officials, stakeholders who worked to educate the public, and the voters, New Jersey had the highest turnout ever for a general election.

In 2021, as the vaccination rate increases, and the pandemic hopefully dissipates, New Jersey will return to its traditional manner of voting – in person or no-excuse vote-by-mail. However, even though voting will return to its traditional process, voters should be aware of some new changes to voting.

How Can I Vote in 2021?

Vote-By-Mail

First, individuals who found vote-by-mail easy to use and wish to continue to vote that way, can vote-by-mail. However, unlike 2020 in which the ballot automatically was sent to each voter, an individual who wishes to vote by mail will have to fill out a vote-by-mail application to request that they receive a ballot. An individual can obtain a vote-by-mail application at the New Jersey Division of Elections website: https://nj.gov/state/elections/vote-by-mail.shtml. In addition, if you choose to vote-by-mail, you will still have the option to mail your ballot back, or you may drop it in a secure ballot box. Your individual county will identify the locations of the ballot boxes before the election.

In-Person 

For individuals with disabilities that affect their ability to handle a paper ballot, in-person voting on an accessible machine is an easier method to vote independently and privately. For other individuals with disabilities, being able to vote in person provides them with a sense of community, and as a result, they wish to continue to vote in person. For those interested in voting in person on a voting machine, you will have two options. You will be able to vote on a machine, on Election Day as has been the traditional option for individuals voting in New Jersey. In addition, New Jersey just passed a law allowing for individuals to vote early on a machine, which will go into effect for this year’s general election in November. Each county will have to offer nine days of early voting before the general election. Going forward, each county will have to offer early voting before the primary, although the number of days is less than the general election. The number of early voting locations will be determined by the county and depends upon the county’s number of registered voters. For individuals who are unable to vote on Election Day and do not like using vote-by-mail, you will now have the option to vote in person on a voting machine before the election.

Why Should I Vote in 2021?

Although 2020 had the highest turnout for an election in New Jersey history, turnout usually drops off in non-presidential election years. However, 2021 is an important election year in New Jersey. First, New Jersey has a race for Governor. In addition, all state legislative offices are on the ballot as well. Although voters regularly see the importance of voting for president, state elections can have a greater impact on an individual’s life. State laws and regulations govern such issues as voting, transportation, Medicaid and health care, and housing. So, it is important to remember that the individuals that are being chosen in November will be writing the laws that will impact your daily life. And now that New Jersey has in-person voting on Election Day, in-person early voting, and no-excuse vote-by-mail, voting has never been easier or more convenient. So, take a few minutes and vote!!!