General Information on Guardianship
The New Jersey Courts website provides a wealth of general information on guardianship, including:
Types of Guardianships
Responsibilities of a Guardian
Guardianship reporting requirements
How to apply for Guardianship (typically for someone that you know)
How someone id determined to be incapacitated
And More!
National Guardianship Association
Volunteer Guardianship One-on-One is a proud Member of the National Guardianship Association (NGA). Their mission is to advance the nationally recognized standard of excellence in guardianship. NGA seeks to protect adults under guardianship by ensuring that their guardians receive quality education and access to resources. The association is recognized as the leading national resource for professional development.
VG follows the NGA’s Ethical Principles and Standards of Practice and educates our guardians on these important guiding documents
All VG guardians are encouraged to become Certified Guardians through the Center for Guardianship Certification (CGC). VG will cover the cost involved in this process which includes completing 20 CEUs of CGC accepted coursework within two years prior to the applicant applying for certification and passing an exam
Causes of Incapacitation
Dementia, Developmental Disabilities & Mental Illness
The three common causes of incapacitation are
Dementia
Intellectual & Developmental Disabilities (IDD)
Severe Mental Illness
though there are others. It is important to note that all individuals deemed incapacitated should still be afforded opportunities to participate to the maximum extent possible in making and executing decisions about themselves. Guardians should engage individuals in the decision- making process, ensuring that their preferences and desires are known, considered, and achieved to the fullest extent possible.
Dementia is the most common reason a person becomes incapacitated. There are many different kinds of dementia – Alzheimer’s is just one. Following are some examples of different dementias with may lead to drastically different symptoms in different people.
Alzheimer’s Disease
- This is the most common form of dementia (60 – 80%, per the CDC
- It is caused by plaque that grows in the brain.
- Recent and new memories become more challenging; old memories can last much longer
- A major risk factor is family history (the risk increases 10 – 30% if a first-degree relative develops it.
It is caused by plaque that grows in the brain.
Vascular Dementia
- This is caused by anything that restricts blood flow to the brain, such as a stroke.
- The risk increases with the presence of diabetes, hypertension or high cholesterol –all things that can affect blood flow to the brain
- The order and severity of symptoms depend on the part of the brain that was affected by the loss of blood.
Lewy Body Dementia
- Scientists don’t know what makes LBD happen, and there’s no specific test for it.
- Symptoms begin with stiffness for trembling & may include daytime drowsiness, staring spells & confusion
- Some one with LBD may have hallucinations.
- LBD sometimes appears alongside the dementia that cones in later-stage Parkinson’s disease.
Frontotemporal Dementia
- Scientists think FTD is caused by gene mutations
- Because of where it first develops, people with FTD lose impulse control and can behave in inappropriate ways.
- It can make it difficult to understand language
- FTD tends to strike younger people ( 40 – 60) while Alzheimer’s appears more often later than this.
- Its closely related to ALS (Lou Gherig’s disease).
Mixed Dementia
- Sometimes we just don’t know, or there are multiple kinds happening simultaneously.
- It often shows plaque deposits & damaged blood vessels. Sometimes Lewy bodies are also present.
- It can progress more quickly and in unexpected ways for this reason.
- Symptoms? About as unpredictable as you’d expect.
Intellectual & Developmental Disabilities are usually present at birth and that uniquely affect the trajectory of the individual’s physical, intellectual, and/or emotional development. Many of these conditions affect multiple body parts or systems.
An intellectual disability starts any time before a child turns 18 and is characterized by differences with both:
- Intellectual functioning or intelligence, which include the ability to learn, reason, problem solve, and other skills; and
- Adaptive behavior, which includes everyday social and life skills.
Three major known causes of intellectual disability are Down syndrome, Fetal Alcohol Spectrum Disorder (FASD), and Fragile X syndrome. People with intellectual disabilities are more likely to also have autism spectrum disorder (ASD), cerebral palsy (CP), attention deficit hyperactivity disorder (ADHD), seizures, and mental illness
Down Syndrome
Down syndrome is a condition in which a person has an extra chromosome or an extra piece of a chromosome. This extra copy changes how a baby’s body and brain develop. It can cause both mental and physical challenges during their lifetime. Even though people with Down syndrome might act and look similar, each person has different abilities. The symptoms of Down syndrome are different in each person. And people with Down syndrome may have different problems at different times of their lives. They usually have mild to moderate intellectual disabilities.
Fetal Alcohol Spectrum Disorder (FASD)
Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person exposed to alcohol before birth. These conditions can affect each person in different ways and can range from mild to severe. People with FASDs can have lifelong effects, including problems with behavior and learning as well as physical problems.
Fragile X syndrome (FXS):
Fragile X syndrome is a genetic disorder and one of the most common causes of inherited intellectual disability. FXS affects both males and females. Males who have FXS usually have some degree of intellectual disability that can range from mild to severe. Females with FXS can have normal intelligence or some degree of intellectual disability. Autism spectrum disorder (ASD) also occurs more frequently in people with FXS.
Traumatic Brain Injury (TBI)
Traumatic brain injury usually results from a violent blow or jolt to the head or body. An object that goes through brain tissue, such as a bullet or shattered piece of skull, also can cause traumatic brain injury. Many factors—including the size, severity, and location of the brain injury—influence how TBI is treated and how quickly a person might recover. Moderate and severe traumatic brain injury (TBI) can lead to a lifetime of physical, cognitive, emotional, and behavioral changes. These changes may affect a person’s ability to function in their everyday life.
According to the American Association on Intellectual and Developmental Disabilities (AAIDD), most people with intellectual and developmental disabilities (IDD) can manage their own affairs with assistance and guidance from others, such as family and friends. However, if the use of a guardianship becomes necessary, it should be limited to the fewest restrictions necessary for the shortest amount of time and tailored to the individual’s specific capacities and needs. When someone with an IDD does not have family or friends available, it becomes more challenging.
Severe Mental Illness is a third main cause of incapacitation, and that can feel alarming to the millions of people who have the capacity to manage their own mental illnesses. To be declared incapacitated by mental illness, someone typically needs to have a severe illness that can be determined by more than one doctor or psychologist to be disabling. While there are others, there are two diagnoses that can have profound implications for cognitive functioning.
Bipolar Disorder (BD)
Bipolar Disorder is a severe mental illness that causes unusual shifts in a person’s mood, energy, activity levels, and concentration. These shifts can make it difficult to carry out day-to-day tasks. BD has a well-established pattern of cognitive difficulties, including diminished attention, verbal memory, and executive functioning abilities. Bipolar disorder is a lifelong illness. Episodes of mania and depression typicallycome back over time. Between episodes, many people with bipolar disorder are free of mood changes, but some people may have lingering symptoms.
Schizophrenia
Schizophrenia involves a disconnection from reality. Many people with schizophrenia can’t recognize that they have symptoms of schizophrenia. These are the five main symptoms of schizophrenia
- Delusions: These are false beliefs that someone holds even when there’s plenty of evidence that those beliefs are wrong.
- Hallucinations: Someone thinks they can see, hear, smell, touch or taste things that don’t exist, like hearing voices.
- Disorganized or incoherent speaking: Someone might have trouble organizing their thoughts while speaking.
- Disorganized or unusual movements: Someone might move differently than people around them expect.
- Negative symptoms: These refer to a reduction or loss of your ability to do things as expected such as making facial expressions, or speaking with a flat, emotionless voice.
Advances in medications and other psychosocial supports have had a positive impact on the treatment of severe mental illness. If the court has determined that someone is incapacitated as a result of their illness, they, like anyone under guardianship, should be engaged in the decision- making process, ensuring that their preferences and desires are known, considered, and achieved to the fullest extent possible.
Elder Abuse
Reach Out, Make Connections, Prevent Elder Abuse
These are red flags of elder abuse that everyone should be aware of
Elder abuse is defined by the US Department of Justice as an intentional or negligent act by any person that causes harm or a serious risk of harm to an older adult. It is a term used to describe five subtypes: Physical abuse, sexual abuse, emotional / psychological abuse, neglect and abandonment, and financial exploitation.
Many of our referrals come from Adult Protective Services (APS). Sometimes this means that neighbors noticed that someone living alone has begun acting oddly and self-neglecting. Other times, sadly, it means that the incapacitated person has been the victim of elder abuse. It’s more common than you think.
Before the pandemic, it was estimated that one in 10 Americans over the age of 60 experienced elder abuse. During the pandemic, this increased dramatically – to one in 5. And those are just the cases that are reported; for every one reported case, it’s estimated that there are 24 more victims who suffer in silence. Nearly fifty percent of victims of elder abuse are family members (probably because families most often end up doing the day-to-day care of their parents or other elder family members, a job that is overwhelming, causes burnout, and often isn’t recognized by others as difficult.
Abuse & Trauma
There are those who assume that people with dementia just move on from trauma because they can’t remember anything anyway. But they’re wrong. Often, someone with dementia who forgets the details will remember the feeling, the emotions involved. They might have a heightened sense that something bad happened, even though they can’t describe it.
The very loss of control that comes with dementia is itself traumatizing, especially in the earlier phases. Imagine: Suddenly, you lose time – you can’t remember several hours in your day. Then, you notice things are being moved; they aren’t where you remember putting them. You start feeling paranoid – maybe someone is coming in and stealing the things you can’t find. You worry that you don’t have enough of the things you need, since they keep disappearing. It would be incredibly stressful to live that way.
In an especially cruel twist, for some people, the loss of cognitive control means a loss of the protective factors that have been repressing or managing painful memories. For example, when a vet who was able to control his PTSD for decades loses his faculties, memories may come rushing back in, causing terror or sorrow or fury. It’s important to be sensitive to the possibility that someone who is incapacitated may have experienced trauma and to view their behaviors through the lens of their disability as well as what might have happened to them in the past.
Long Term Planning
Maintaining independence and making our own decisions is very important to most people. While we can’t always control what will happen down the road, we can plan ahead so that our wishes are known if we are unable to communicate them directly.
In New Jersey, the Practitioner Orders for Life Sustaining Treatment form enables patients to indicate their preferences regarding life-sustaining treatment. This form, signed by a patient’s attending physician, advanced practice nurse or physician’s assistant, provides instructions for health care personnel to follow for a range of life-prolonging interventions. This form becomes part of a patient’s medical records, following the patient from one healthcare setting to another, including hospital, nursing home or hospice. The POLST can be completed by the individual directly or by someone on behalf of the person (i.e. a guardian)
Download a POLST form
Download an Advanced Care Directive
Power of Attorney (POA): A power of attorney names a person who can act on your behalf in different situations. The person making a power of attorney must be of sound mind, it cannot be done by someone that is/has become incapacitated. Choosing a trusted person to be your POA can make things much easier if there comes a time when you can no longer make your own informed decisions. There are different types of Power of Attorney; learn more here.
Do Not Resuscitate (DNR): These protocols allow patients at home, through their physicians, to choose comfort measures over aggressive resuscitative attempts at the end of life. Learn More about DNR
Making a Will, also called a “last will and testament,” can help you protect your family and your property. You can use a will to: leave your property to people or organizations; name a personal guardian to care for your minor children; name a trusted person to manage property you leave to minor children, and name an executor, the person who makes sure that the terms of your will are carried out.
If you die without a Will, or “intestate,” your probate assets and estate are divided according to New Jersey’s intestate laws. The Surrogate will determine whether or not an Administrator needs to be appointed, depending on the size of the estate. If you die without a Will, or “intestate,” your probate assets and estate are divided according to New Jersey’s intestate laws. The Surrogate will determine whether or not an Administrator needs to be appointed, depending on the size of the estate.
If there are no surviving spouse, children, parents, or other identifiable relatives, the estate will “escheat” to the state, meaning the government will take possession of the assets.
Making a will is one more way in which you can ensure that your wishes are carried out even if you are not there to make it happen.
Learn More about the importance of a will
In plain language, Five Wishes lets your family and doctors know:
- Who you want to make health care decisions for you when you can’t make them.
- The kind of medical treatment you want or don’t want.
- How comfortable you want to be.
- How you want people to treat you.
- What you want your loved ones to know.
Learn More about Five Wishes
Funeral Planning
Pre-planning a funeral can help relieve the stress on others of making arrangements during an emotional time. It can also help you qualify for long-term care assistance programs like SSI/Medicaid.
Learn More about Funeral Planning