Protecting Our Most Precious 

As a parent, it is very difficult to think about not being there to provide the love and care your child requires. However, should the unthinkable happen and you are unable to be there to care for them, who is best suited to step in and be their guardian? Making the task even more difficult, many of those we would consider our top choices- aging parents or siblings with children of their own - may be less than perfect choices. 

A guardian is not empowered by your legal documents but is appointed in the court system. Although difficult, naming a guardian in your legal documents is critical, as it will provide your direct input for the court to consider in the guardianship appointment. While guardianship ceases to be an issue for typical children as they reach adulthood (age 18, in most states), for individuals with special needs the role of guardian (or alternatives to guardianship) takes on even greater importance.

When a child reaches age 18, if appropriate, their parent (or parents) must apply for legal guardianship to be able to make decisions on behalf of their adult child. 

TEN FAQs about Guardianship

  1. What is Guardianship?

Guardianship is a legal process that gives the guardian permission to take care of and make decisions for an incapacitated adult. An incapacitated person is someone with a clinically diagnosed condition that keeps them from being able to make or communicate decisions about their physical health, safety, or care. An incapacitated adult may also called a protected person or in legal terms, a ward. (Source: Mass.gov)

A guardian is approved and appointed by the court and has the legal authority and responsibility to care for the person and their property. The guardian will also be supervised by the court and required to provide an annual report on the status of the protected person. 

  1. What are the types of Guardianship?

Types of guardianship may vary from state to state.  It is important to consult your special needs planning attorney, financial advisor and search your state's guardianship association or advocacy organization for information specific to your locale. Some of the most commonly used forms of guardianship are listed below:

    • A  guardian of the person  is responsible for monitoring the care of the person with disabilities, also called the protected person. The guardian need not use their own money for the protected person’s expenses,  provide daily supervision of them or even live with the  protected person. The guardian must attempt to ensure, however, that the protected person is receiving proper care, housing, and supervision, and the guardian is responsible for decisions regarding most medical care, education, vocational planning, and end-of-life decisions. 
    • A  guardian of the estate  or  conservatorship should be considered for persons with disabilities who are unable to manage their finances and have income from sources other than benefits checks, or have other assets and/or property. The conservator is responsible for handling the protected person’s financial resources, but is not personally financially responsible for the protected person from  their own resources. In most jurisdictions, the conservator must file an annual accounting of the protected person’s funds with the court. 
    • A  limited guardianship may apply to only certain areas of decision making, such as decisions about medical treatment, in order to allow the protected person to continue making their own decisions in all other areas. The benefit of a limited guardianship is that the guardian’s responsibilities can be tailored to fit the protected person’s special needs in the least restrictive manner. Further, under a limited guardianship, the protected person has not been declared incompetent. 
    • A  temporary guardian  or conservator may be appointed by the court in an emergency situation when certain decisions must be made immediately. In many states, a permanent guardianship or conservatorship must be requested along with the temporary appointment. The duration of a temporary appointment is dictated by state law, generally up to 90 days. There may also be an option to name one person as a temporary guardian and then have another person(s) serve as the permanent guardian.  
    • A  successor guardian  should be named in your (the parent’s) legal documents, such as your will to make it easier for the next person to step into their role as your successor guardian. You may want to consider a co-guardianship during your lifetime with the person you would like to be your successor guardian.   
  1. When are Guardianship or Conservatorship appropriate? 

Once an individual reaches the age of 18, their parent is no longer their legal guardian. Parents need to explore the legal options available to protect their child and to select a preferred guardian before the child's 18th birthday.

In the case of a person with special needs, their capacity to receive, evaluate and communicate information about a decision, along with the importance of the decision, should influence whether they require guardianship or conservatorship. The chart below generalizes the issues involved in guardianship vs. self-determination but may be viewed as a guideline to help parents decide when to consider intervention. “High Risk” decisions, such as receiving needed medical care or spending or transferring a large sum of money, can be a first place to focus. 

Type of Decision -e.g., medical or involving a large sum of money

Individual's Ability to Receive, Evaluate and Communicate Relevant Information 

Possible Action to Take

High Risk

High Capacity

Accept the individual's right to make their own decisions. Explore supported decision making (SDM).

High Risk

Low Capacity

Legal intervention indicated- e.g., guardianship or conservatorship

High Risk

Moderate Capacity

Supported decision making indicated; talk with the individual to reduce resistance, reduce risk and increase their capacity to understand

 

  1. What are the alternatives to Guardianship? 

If an individual with a disability can make some but not all decisions, one or more of the alternatives to guardianship discussed here should be considered. Courts will generally favor placing individuals in the Least Restrictive Environment needed and the following alternatives to guardianship are listed from least restrictive to most restrictive:

    • A joint bank account can be created to prevent rash expenditures. Arrangements can be made with most banks for benefits checks, such as Social Security or SSI payments, to be sent directly to the bank for deposit. In addition, arrangements can be made authorizing the bank to send certain sums of money on a regular basis to a specified party, such as the landlord, or the person with a disability for spending money. This helps provide structure to allow for budgeting and money management. Remember to keep this account balance below $2,000 if they are receiving SSI benefits.
    • A representative payee can be named to manage the funds of a person with a disability who receives benefits checks from Social Security, Railroad Retirement, or the Veterans Benefits Administration. Benefits checks are sent to the representative payee, who manages these funds and spends them for the benefit of the person with the disability. 
    • A durable power of attorney (POA) for property is a legal document that grants one person the legal authority to handle the financial affairs of another. Generally, a POA should be used when the individual with disabilities has the capacity to make basic meaningful decisions and does not require full guardianship but may not be able to make complex financial decisions without support.
    • A durable POA for health care, also known as a health care proxy, is a legal document granting decision making powers related to health care to an agent; it may generally provide for the removal of a physician, the right to have the incompetent patient discharged against medical advice, the right to medical records and the right to have the patient moved or to engage another treatment. A durable POA should be considered for individuals who are presently capable of making decisions about their health care and wish to allow someone to help make important health care decisions in the future.
    • An appointment of advocate and authorization allows a person with a disability to designate an agent to advocate on their behalf with administrative agencies such as the state department of cognitive disability, the department of mental health services, or the department of medical assistance. The agent can be granted specific powers, such as access to rehabilitation and school records, as well as the authority to release records, to approve placement or services, to attend meetings, and to advocate generally on behalf of the individual with a disability. The document must be in writing, witnessed, and, depending on state law, notarized.
    • HIPAA Release form allows a person to receive protected medical information about the person. If an individual would like for their parent, or their desired health care proxy, to have the ability to discuss their medical information with their doctors, they should provide the authorization for their doctors and/or therapists to discuss this information with those they appoint. Having a HIPAA Release form on file with those doctors and therapists will be helpful in allowing them to discuss protected medical information. 
    • Trusts may be an appropriate alternative to appointment of a conservator in some circumstances. Creating a trust may be less expensive than a conservatorship, in that no bond is required; it will keep the courts, and their associated costs, out of everyone’s life (in most cases permission of a court is not needed to make disbursements from the trust or to make investments). The trust will also protect the beneficiary’s assets without requiring that they be declared incompetent by a court. Careful consideration must be given to the type of trust used. 
    • A living trust for an individual with significant assets may be more appropriate than a first-party payback trust if the individual will likely not require or receive certain government benefits that limit the ownership of assets to $2,000. They may be able to name another trustee to serve as the managing or fiduciary trustee on their behalf. This allows them to have enough control to name the remainder beneficiaries of their money and/or to remove or replace a trustee. However, a trust set up without regard to the eligibility laws may disqualify a person with disabilities from SSI, Medicaid, and other important benefits that could be needed in the future.  
    • A special needs trust will make it possible for the beneficiary to receive extra income without losing eligibility for valuable state and federal benefits.  See A Parent's Guide to Setting Up a Special Needs Trust
    • Supported decision making (SDM) allows an individual with a disability to make choices and decisions about their life with the support of a designated person or team of trusted supporters. They can stay in charge but have help when needed. The underlying principle of SDM is that everyone has the right to make choices. A good resource is the National Resource Center for Supported Decision-Making
  1. What are the key roles and responsibilities of a guardian?

A Guardian’s duties will vary depending on the adult’s abilities and limitations, but generally will include the following:  

    • Ensure the adult’s living situation is safe and appropriate (least restrictive environment)
    • Provide for the adult’s everyday basic needs and safety
    • Make ordinary medical care decisions and arrange for needed treatment
    • Provide for the social, educational, recreational and future needs of the adult
    • Apply for health insurance and other benefits, if needed
    • Advocate for the adult’s legal rights and independence

Please check with a disability law professional or the probate court in your state to confirm details for your own case. Source: Massachusetts Guardianship Association

  1. What are the qualities to look for when selecting a guardian and successor guardians?

Who should serve as guardian and successor guardian for an adult with disabilities?  Any person over the age of 18 may be a guardian. Many times, parents will ask the court to appoint one or both of them* as guardians but even in this case, the choice of a successor guardian remains. 

*Parents should keep in mind that if they have access to receive a Medicaid stipend to be their child’s paid caregiver, they will be not be able to be their legal guardian as well. In this case, parents may consider choosing one parent to be the guardian while the other serves as the Medicaid provider.

Parents should talk with potential successor guardians to be sure they fully understand the responsibilities and the resources that accompany this role. One of the big issues to discuss is where the adult with disabilities will live. The protected person may be living independently in a residence, at home, or may be directed to live in the home of the proposed guardian. In some instances, it may be appropriate for the stability of the protected person to have the guardian move into their home.

While proximity is important, parents should think carefully about their family and friends and consider successor guardian decisions based not on which sibling is the oldest or who is living closest, but who will best attend to the care and protection of the protected person if the parent is not living. In addition to naming the successor guardian in their will, parents should prepare a Letter of Intent to provide guidance on the details of daily living. 

  1. How long do the responsibilities of a guardian last? 

Guardianship ends when the protected person dies. Guardianship also ends when a guardian dies, is unable to perform their duties or petitions the court that they no longer want guardianship of the individual. The court will appoint a new guardian, many times the successor guardian identified by the parents. 

  1. What are the financial responsibilities of a guardian? 

In general, the guardian or conservator is responsible for handling the individual's financial resources but is not personally financially responsible for the protected person from their own resources.

A protected person may have a special needs trust established for them, and there will be a trustee appointed to oversee the management of the assets in the trust. The guardian will request funds from the trustee to maintain the protected persons household, and pay for trips, vacations, clothing, etc., for the protected person's benefit. It is important to have the guardian and trustee have a respectful and trusting relationship, as the trustee may resist making some requested distributions if the guardian and trustee have a conflict. 

  1. How and when do you ask someone to be a guardian?

Planning for guardianship is a critical legal task for all parents and even more so for parents of a person with disabilities. There should be careful consideration of family, friends and professionals in determining who would be best suited to each role in helping care for the individual as you, as parents age or when you are no longer living.

It is important for parents to have an open discussion and on-going communication with the people they wish to be involved in caring for their child in the future. An example of this may be found in the story of our own Nadworny family's planning for James' guardianship in A Talk with my Parents around Our Holiday Table.

There are many considerations to be weighed, and a potential guardian’s financial resources are amongst them. For example, a younger sister with small children may have the qualities to be an ideal successor guardian but lack the cash flow and savings that would enable her to fully take on the guardianship responsibilities. If there are sufficient resources in a special needs trust, it is possible to provide for the retirement, healthcare and other necessary expenses for this sister and enable her to take on the guardianship role.  

  1. How do you implement your plan for guardianship?
    • Nominate a guardian in a will. A parent may nominate someone to be guardian of their child (whether under 18 or, if disabled, 18 and over). This person will still have to be confirmed by the court after the parent’s death, but is wise to include the nomination in the will so the parent’s preference is known.
    • Designate a standby guardian. Most states have a process by which a parent can designate a guardian to take care of a child in the event the parent is incapacitated or has died. If the parent believes their choice of guardian will be contested by the other parent or by family members, the guardianship designation can be confirmed by the surrogate or probate court before the parent dies. Not all states have this process, but if it is available in the state in which the child lives, the parent should both nominate a guardian in their will and designate a standby guardian.

Sources: 

    • The Special Needs Planning Guide, How to Prepare for Every Stage of Your Child's Life, Haddad/Nadworny
    • Massachusetts Guardianship Association
    • Special Needs Alliance

 

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Ten FAQs about Guardianship

Related resources to download: 

LOI-2 SNT ABLE Fact sheet
 
 

It may not be possible to know exactly what will be needed to provide for your family's future needs and goals. By moving forward and working with a plan, you are doing all you can to care for and protect your family's future. 

Let's start planning.