The definition and rules governing Guardianship vs. Conservatorship can vary from state to state; therefore, please seek legal advice for details on your specific state laws and what type of guardianship or conservatorship your loved one will require.
A guardianship – or conservatorship depending on the state – is a legal action that grants an adult legal power to make decisions for another person. Guardianship is a legal means for protecting adults who cannot take care of themselves, make decisions that are in their own best interest or handle their assets.
Generally, the natural guardianship of a minor child terminates at the age of 18, when the parent is no longer the child’s legal guardian regardless of a disability. Adults with DEEs are not likely able to give reasoned and well-informed consent when making a decision. Most likely, setting up a guardianship will be necessary for their safety and well-being.
However, keep in mind guardianships can be relatively inflexible as compared to less intrusive options such as trusts. When considering the different types of available financial planning tools, families will need to consider some of the following questions:
- Will your loved one with rare epilepsy now or in the future need residential care? Can your loved one live with a relative, friend, or group home in the future? What are the estimated costs of these arrangements?
- What are your loved one’s recreation, leisure time and social needs?
- Does your loved one’s disability involve the possibility of declining health with age and potentially more involved healthcare needs and cost?
- What will the transportation costs for this individual be now and in the future? For instance, is a handicapped accessible van needed for their transport?
The following is a brief description of the types of guardianships generally available:
- A Guardian of the Person would be responsible for monitoring the care of your loved one.
- A Guardian of the Estate or Conservatorship should be considered for loved ones with disabilities who are unable to manage their finances and who have income from sources other than benefit checks or have other assets and/or property.
- A Limited Guardianship may limit the guardian’s decision making to certain areas, such as decisions about medical treatment, to allow your loved one to continue making his/her own decisions in all other areas. This will not be an option for the majority of our loved ones with rare epilepsy.
- A Temporary Guardian or Conservator may be appointed in an emergency when certain decisions must be made immediately.
- A Letter of Guidance with supportive documentation is an important accompanying document for guardianships.
Alternatives to Guardianships
The definition and rules governing Alternatives to Guardianship can vary from state to state; therefore, please seek legal advice for details on your specific state laws and what type of alternative guardianship your loved one will require.
Parents, family members and/or other potential caregivers must carefully consider your loved one’s circumstances, including strengths/weaknesses, needs and interests, before deciding to seek guardianship. If your loved one with rare epilepsy is capable of making some but not all decisions, some less-intrusive alternatives to guardianship listed below may be considered:
- A Representative Payee (often a family member, friend, or nonprofit agency) can be named to manage the funds of a person with a disability who receives government benefits checks, such as SSI and SSDI (Social Security Disability Insurance).
TIP: The Social Security Administration (SSA) has two excellent resources to help you apply for SSDI: Child Disability Starter Kit and Adult Disability Starter Kit. It is also possible to hire someone at a law firm, or other individual who offers these services, who can work with you to obtain the needed information and to act as a representative for your child to complete this paperwork.
- A Durable Power of Attorney for Property is useful for individuals with mild or moderate disabilities who are capable of choosing another person to handle their money.
- A Durable Power of Attorney for Health Care or Medical Power of Attorney, also known as a Health Care Proxy, should be considered for individuals who are disabled and who can make some, but not all health care decisions. This is a legal document that enables a competent individual (the “principal”) to designate a health care agent to make health care decisions should the individual become incompetent to make them.
- An Appointment of Advocate and Authorization is a customized power of attorney that allows an individual with a disability to designate an agent to advocate on his/her behalf with administrative agencies such as your state’s Department of Developmental Services, Department of Human Services, Medicaid, local education authorities and any other state or federal agency from which an individual is receiving services.
As individuals and their families consider the different legal planning tools that work best for their situation, keep in mind the Social Security Administration (SSA) will only speak with a representative payee with regard to a person’s benefit checks and will not speak with an agent who has been designated as a durable power of attorney for health care or advocate for the individual with a disability.
Legal assistance is sometimes needed to assist with certain barriers or challenges that are unique to your situation for appropriate resolution. We cannot endorse an individual or organization.
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This Guide can help you get organized, but should not be considered as a substitution for legal, financial, or medical advice.
VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.
Updated 07/09/25 (AM)