As soon as your special needs child turns 18 you no longer have the legal authority to make medical and financial decisions on their behalf. For some families, seeking legal guardianship is the only way to ensure a seat at the table.
Do you ever lay awake at night wondering what will happen to your special needs child when they reach adulthood? We spend years pouring ourselves into our children’s lives when they are young trying desperately to provide any advantage we can find. Yet, when a child with cognitive disabilities nears their 18th birthday, the idea that they are considered an adult by the law is terrifying. After all, we are the ones who know them best!
Most states recognize our rights as parents and consider us as legal guardians of our children until they reach 18. We as parents have the legal authority to make medical and financial decisions in the best interest of our children. This authority is unquestioned when our child is a minor, however, as soon as our child turns 18 that authority ceases. Many parents are often forced to wonder whether they should seek decision-making authority for the child, and if so, how much authority we ultimately need to have. Legal guardianship is the tool available to retain authority and help our special needs children navigate their lives.
Definitions You Should Know
Minor– a minor is a person under a certain age, usually the age of majority, which legally demarcates childhood from adulthood. The age of majority depends upon jurisdiction and application, but it is generally 18.
Ward– a person (usually a minor) who has a guardian appointed by the court to care for and take responsibility for that person. A ward is typically a minor or one legally incapable of managing his/her own affairs and is placed under the control or protection of a guardian.
Guardian– a person who has been appointed by a judge to take care of a minor child (called a “ward”) or incompetent adult personally and/or manage that person’s affairs. To become a guardian either the party intending to be the guardian or another family member, a close friend or a local official responsible for the child’s welfare will petition the court to appoint the guardian.
Conservator– In some states, the financial affairs of a person are dealt with separately from a guardian by a person called a “conservator.” In a case where a disabled person has assets that need to be protected and invested, it may be that both a conservator and a guardian are appointed for the person. In most cases, the guardian and conservator are the same person.
Successor Guardian– A guardian can also nominate a successor guardian and should do so to be sure that the child is cared for if the current guardian dies.
Why and When You Should Consider Guardianship
Any person 18 years of age or older may be a guardian. However, it is most often the parents who petition the court to be the guardians of their child and usually, the petition is granted. The court can either appoint one parent as the guardian or both parents will be appointed as co-guardians. In the case of divorced parents, if they cannot agree on who should be appointed as guardian, the proceedings may become contested, and the court will appoint an independent guardian.
In naming someone to serve as guardian, courts give first consideration to those who play a significant role in the ward’s life, such as a family member. Sadly not everyone has a family member who is willing or able to serve in that role. If a person is found to be disabled or incapacitated and a suitable guardian cannot be found the guardian may not be a person at all.
Courts in many states can appoint a public guardian such as a publicly financed agency or not-for-profit organization. If there are funds involved or an estate exists, the court’s priority is the best interests of the child and it will often choose an independent guardian or conservator if the parents cannot get along. In some states, mediators are available to help the parents resolve issues rather than having a contested hearing, which can be expensive and take a long time.
Duties and Responsibilities of a Guardian
Parents will often seek guardianship to protect their child and to ensure a place at the table when decisions are made that will affect their child. These decisions may include those made with medical professionals, schools, government agencies, and service providers. They may also need to stand in for legal actions.
Once appointed, a guardian is responsible for monitoring the care of the person with special needs who is now considered a “ward”. The guardian is generally given broad discretion over the life of their ward though they should only be granted only those powers necessary to accomplish what the ward cannot accomplish independently. The guardian’s powers may include making financial decisions, medical decisions, ensuring the educational services are maintained and adequate, and providing housing and general care.
They may also be required to submit updates to the court of the ward’s condition describing the ward’s living situation, the status of mental and physical health based upon medical examinations and official records, provide a list of services being received by the ward, describe services rendered by the guardian, account for the ward’s monetary assets, and any other information necessary to submit to the court in order for it to assess the status of the ward and the guardian’s duties. While guardians aren’t expected to micromanage a ward’s life, they are expected to step in when necessary to make decisions and give consent to things that the ward doesn’t have the capability of doing on their own.
When to Apply for Guardianship
You can apply for guardianship any time after your child turns 18. This is important to understand because the process takes time. Each state will have statutory regulations that determine how early you can start the application process. Many families aim to have as few days as possible between their child’s 18th birthday and their approval for guardianship. They should make every effort to understand the allowed-upon timeline and approval process. Depending on the state and individual circumstances, the process can take several weeks or months to complete.
The Process for Attaining Guardianship
First and foremost, save, save, and save some more! The process to achieve guardianship can be quite expensive. Generally, if guardianship is of the person only, and the ward has no assets, the petitioner (often the parents) bears the cost associated with the court proceedings. If the ward has an estate, the costs of gaining and maintaining the guardianship are borne by the ward’s estate.
Get an attorney, and remember you get what you pay for. There are attorneys who specialize in guardianships and special needs. Hiring an attorney to assist with obtaining guardianships are almost always required by the court. Spend your time researching and interviewing attorneys who have experience in this field.
Have a good relationship with a doctor. A doctor’s certificate confirming the disability is a required part of the process. The certificate will be the primary piece of evidence for the court to verify the disability exists and the person with special needs’ inability to care for him or herself.
Parents, or those seeking guardianship, are called a “petitioner” and must file a petition with the clerk of the court and pay the required fee. The doctor’s certificate will be filed with this petition. Next, interested parties must be notified of the petition. Interested parties typically include the disabled person’s doctor, their caregivers, certain relatives, and/or those with whom the person is living with.
The person with disabilities will then be assigned an attorney who is appointed by the court in addition to the attorney hired by the petitioner. The purpose of this attorney is to protect their rights. Remember, guardianship is a major undertaking that will restrict your child’s rights and this is the courts’ way of ensuring your child’s equities are maintained. This attorney is called a “guardian ad litem” and they will interview your child and make recommendations to the court. There are fees associated with this attorney as well, so this should go into your cost calculus.
Once the guardian ad litem submits their report to the court, the court will set a hearing date and the petitioner (parent) must notify the interested parties of the date. The petitioner and the person with disabilities must appear before the court on their required date. The judge will typically ask the opinion of the person with disabilities or their guardian ad litem and may ask additional questions of the petitioner. The judge will then rule from the bench.
Assuming the petition is granted, the petitioner will want to keep all records of the guardianship order as proof they are authorized to act on behalf of their ward. Next, the petitioner/guardian should designate a successor guardian. Lastly, prepare a letter of intent! The letter of intent is guidance for the successor guardian.
Not Every Child With a Disability Needs to Have a Guardian
Courts often give guardians broad authority to manage the ward’s affairs. As a result the ward will often lose the power to decide how their finances are used, what medical care they receive, and even where they live. A ward may even lose the right to vote or marry or divorce. While guardians are expected to act in the best interests of the ward, guardians are given extremely broad authority. For this reason, guardians are held accountable for their actions to ensure that they don’t take advantage of or neglect the ward.
When considering whether or not to pursue guardianship, it’s important to balance the individual’s privacy and independence and the desire to protect them. The reason many special needs families pursue guardianship is because the court views our children as adults, and we as parents will no longer be able to access an adult child’s health records or take an active role in their IEP meetings unless legal action is taken. It should be cautioned against automatically assuming you want to pursue full guardianship.
Applying for full legal guardianship affects personal decision-making and may not be the best choice for your child if they have the ability to carry on some form of independence. Individual circumstances should be carefully considered before petitioning the court. Guardianship is only appropriate when there are no other alternatives for an individual’s protection. It should always be the intent to choose the least restrictive option.
There are high-functioning individuals with developmental disabilities or mental illness who likely don’t need a guardian. They may be able to work, determine where to live, vote, or even get married. However, they may need some assistance with medical and legal decision-making. In these cases, a limited guardianship may be more appropriate. The less restrictive alternative such as a health care proxy and medical power of attorney, or a conservatorship over a limited amount of funds should be considered instead.
Alternatives to Guardianship
A health care proxy enables the agent to act on behalf of the individual with special needs while still retaining their ability to make decisions. A financial or education power of attorney similarly allows access to records, participation in discussions and signing authority, while not interfering with the individual’s own decision-making rights.
Rather than seek full guardianship to retain control of finances and resources, the better answer may simply be to establish a Special Needs Trust. Such trusts fulfill two primary functions: The first is to manage funds for someone who may not be able to do so himself or herself due to disability. The second is to preserve the beneficiary’s eligibility for public benefits, whether that be Medicaid, Supplemental Security Income (SSI), public housing, or any other program. Keep in mind the Social Security Administration doesn’t require guardianship in order to serve as the representative payee of an SSI recipient.
For more information on guardianship see:
https://www.specialneedsalliance.org/frequently-asked-questions/#guardianship
