Guardianship for Young Adults With Disabilities: What to Expect and How to Afford It

As a parent or guardian of a young adult with disabilities, you know full well that your child may or may not need help making important decisions, financial or otherwise. There’s no one-size-fits-all solution to special needs guardianship, but there are there degrees of need when it comes to guardianship. 

This guide will help you know what to expect financially if you do decide to become a guardian of your child or loved one. It’s sometimes tricky to be sure you’re making the right decision for everyone, but this article will guide you through how parents and other interested parties can become legal guardians of a young adult with disabilities. 

In this article

    What is guardianship?

    As soon as a young adult turns 18, parental authority no longer exists. You must then decide whether to seek guardianship or decision-making authority for the child. The person given the authority to make decisions is called a guardian. Financial decisions can be some of the most challenging for a disabled young adult. Managing bank accounts, investments, small and major purchases and more are some of the most valuable ways in which a guardian can help an incapacitated person.

    There are good reasons why you may want to be the legal guardian of your disabled young adult if you’re a parent (or even if you’re not a disabled young adult’s parent). Specifically, a guardian is appointed by the courts, and the laws are different in every state. Once a disabled young adult has a guardian appointed to him, he’s then called a “ward” or “respondent.”

    There are two types of guardianship: guardianship of the person and guardianship of financial matters, says Margaret “Pegi” S. Price, J.D., professor at National University and the author of the book, “The Special Needs Child and Divorce: A Practical Guide to Evaluating and Handling Cases.”

    Guardianship of the person

    Guardianship of the person involves making decisions about and managing the person’s care. Guardians (who can also be called conservators) must act in the ward’s best interests. The powers and duties of a guardian or those which the court may grant to a conservator include, but are not limited to:

    1. Deciding where the ward will live. 
    2. Administering to a ward’s comfort and maintenance needs, including food, clothing, social and recreational requirements and other day-to-day matters for the ward’s comfort and well-being.
    3. Taking care of a ward’s personal effects, such as clothing, vehicles and more. 
    4. Making day-to-day decisions about medical or other professional care, treatment or service.

    Guardianship of financial matters

    Guardianship of the financial matters is also called a conservatorship. This guardian will use the ward’s assets or income to pay the ward’s bills and apply for government assistance like Social Security disability benefits (SSDI) Supplemental Security Income (SSI), Medicaid or Medicare, as well as other programs. This guardian will handle insurance issues and all other financial matters on behalf of the ward, including the power to approve or withhold approval of any contract involving finances.

    Don’t wait until age 18

    Many families think they don’t need to worry about these factors until a disabled child turns 18, but that’s not true. 

    “What happens if something happens to the parents before the child turns 18? We also make the mistake of assuming that because the child has a disability, the child needs a guardian,” Price says. 

    Not every child who has disabilities needs to have a guardian. If the child is able to make good decisions, then he or she may not need full guardianship. Price cautions those considering guardianship not to assume that because there’s a disability “label” or diagnosis, that there should be a cookie-cutter approach to everyone with special needs.

    “Just because a person has a disability doesn’t mean they can’t think for themselves or make a decision. They might actually be a genius at financial matters but not be able to figure out how to keep groceries in the house. Some need help with daily things, everyday living things,” Price said. 

    Anyone considering guardianship must understand the full ramifications of changing a disabled person’s status to incapacitated. Once the judge finds a person incapacitated, the disabled person loses his right to enter into contracts, sign a lease, make significant purchases like a house, make a will or living trust or get a loan or mortgage.

    Who can be a guardian? 

    A guardian must be 18 years old, a resident of the United States, not of unsound mind, not disabled and not be convicted of a felony, according to Protected Tomorrows. Public agency or not-for-profit corporations found capable by the court of providing care required and a corporation willing to accept and execute trusts may also serve as guardian of the estate.

    Most states have an ordered preference of who serves as guardians of an adult child with disabilities. The preference is usually for the parents. If parents are not available, an adult sibling or other adult family member is the next best choice. If no family members are able to serve as guardian, the task may go to a close friend. If no friends are available, then the court can appoint a professional guardian.

    Steps to take to obtain guardianship

    A guardian might be necessary when the child is unable to make decisions in his or her own best interest or provide for his or her own welfare.

    Here are the steps to getting legal guardianship: 

    1. Fill out forms at probate court and ask for a hearing.
    2. The court will determine when you’ll need to be present for a hearing to determine guardianship.
    3. The adult child will be evaluated by a doctor or other mental health professional to determine how well you make decisions.
    4. At the hearing, the doctor or mental health professional will present his or her findings about the adult child’s level of competence.
    5. The judge will determine what level of guardianship an individual may need. Here are a few options: 
    Type Description
    Power of AttorneyPower of Attorney (POA) is not a type of guardianship. An incapacitated young adult who is incompetent because of a severe disability does not have the legal capacity to grant anyone the authority to act on her behalf through a POA.
    Full GuardianshipA guardian with all powers allowed by law is called a plenary guardian, or a full guardian.
    Partial GuardianshipA guardian with only some powers is called a partial guardian or limited guardian.
    ConservatorshipA conservatorship grants those who are court-appointed the power to make estate planning decisions for someone who is incapacitated and unable to manage his or her affairs.

    Cost of legal fees

    Top of mind for many families are the legal fees they’ll incur. The full costs will depend on many factors, such as how complicated your particular case is, the number of hearings the lawyer has to attend, the amount of investigation and documentation the court requires and whether the proposed guardian and family is easy to work with. 

    “If the family is easy to work with, provides all the information the lawyer needs, aren’t squabbling among themselves and shows up at all the hearings — if people just act like civilized, intelligent professionals throughout, then the costs really don’t have to be that much,” says Price. 

    Here is a list of legal fees and their general cost, though it can vary widely by location: 

    Person representing the alleged disabled person: Will look at medical records, meet with the disabled person, find out that person’s wishes, meet the proposed guardian(s) and write a report: Around $3,000 and approximately $250 per hour.

    • Attorney fees: A few hundred dollars per hour
    • Service fees (for the sheriff to personally serve the papers): About $100-200 
    • Court fees: $200-300 range
    • Medical, psychiatric, vocational expert or some other expert on disabilities: $500-600 an hour (you can spend up to $10,000 on an expert, and when people do not agree on a guardianship, that the costs can be prohibitive).

    After the guardianship has been established, court costs, attorneys’ fees for both the petitioner and the proposed ward/protected person and any ongoing guardian fees are all paid from the protected person’s estate. Guardians are also allowed to charge a fee for their services. The county court or social services department may have a policy regarding paying for some of these costs if the ward has no money to pay for guardianship services. Review your financial situation regularly to determine how you can best afford to take care of your loved one. 

    Affording the costs

    In the vast majority of cases, the family members (usually the parents of the ward) pay the legal fees and court costs for guardianship, though some charitable organizations cover or help with the costs of guardianship. 

    Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) 

    Social Security Disability Insurance (SSDI) offers benefits to those who are disabled or blind and are “insured” by workers’ contributions to the Social Security trust fund. These contributions are based on the disabled person’s earnings as required by the Federal Insurance Contributions Act (FICA). The amount of your monthly disability benefit is based on your lifetime average earnings covered by Social Security.

    Supplemental Security Income (SSI), on the other hand, is a federal income supplement program funded by general tax revenue. SSI is designed to help aged, blind and disabled individuals who have little to no income and provides cash to meet basic needs for food, clothing and shelter. 

    Health care

    The low-income aspect of Medicaid requirements can make it the best and most affordable option for health care for disabled young adults. Medicaid provides basic medical care to low-income individuals. Most states also have Medicaid programs covering residential, day care, career and other services. 

    Personal loans

    A personal loan is one way you can pay the costs of guardianship. You’ll need to prove that you’re a good candidate to pay back a personal loan through a credit check. Personal loan is an unsecured loan, which means you don’t have to put up collateral (like a car or house) to get one. Fixed interest rates, good credit scores and fixed monthly payments are some of the main characteristics of a personal loan and can cover some of the costs for guardianship or other needs for the disabled young adult’s care.

    Consult legal aid organizations

    Legal aid organization funding can help with fees or handle them completely. Legal Services Corporation (LSC) provides financial support for civil legal aid to low-income Americans. Find a legal aid organization near you. 

    Consider a special needs trust

    You could also consider a special needs trust, which enables assets to be held on behalf of someone with disabilities without affecting their eligibility for government aid like Medicaid or SSI. For example, if a well-intentioned aunt decides to leave money to the disabled person upon the aunt’s death, the disabled person may make too much to be able to receive disability. Price recommends getting a lawyer to set up a special needs trust. “Do not use an online form. It’ll vary so much by state,” she says.