For the first 17 years, parents guide and support their children in various aspects of life, such as providing essential care, educating them, addressing their medical concerns, nurturing their emotional and physical development, setting rules and consequences, and ensuring their safety and well-being.
While the child is under 18, the parents have the legal right to make important decisions on behalf of their child. This includes choices related to education, health, and welfare.
Once the child turns 18, they become legally independent and have the right to make their own decisions without needing their parents’ permission.
However, individuals with Intellectual and Developmental Disabilities (IDD) and autism may require ongoing support even after reaching adulthood. The child may not feel prepared to take on these responsibilities right away – or they might not ever feel ready.
Fortunately, various options are available to assist young adults as they navigate this new phase of life. Numerous support services offer guidance and resources to help them develop the necessary skills for independent living.
If, after considering the options, a parent believes it’s best for them or another trusted person to continue making certain decisions for the child, they can seek legal guardianship through the court.
This legal process allows for continued support by enabling someone to make important decisions on behalf of the young adult, ensuring their well-being while respecting their evolving independence.
Guardianship is a legal mechanism that can help protect their rights and well-being, but it also raises important questions about autonomy and agency. This article aims to clarify the concept of guardianship, the legal rights of individuals with IDD and autism, and alternatives to traditional guardianship.
What is Guardianship?
Guardianship is a legal relationship in which a court assigns someone, called a guardian, to make important decisions for another person, known as the ward, who is considered incapacitated and unable to make those decisions independently.
This process involves the court assessing whether the individual lacks the capacity to handle essential matters, such as managing their money, making health care choices, or taking care of daily activities due to factors like age-related issues, mental illness, or physical limitations.
The guardian can be a family member, friend, or professional appointed by the court, and their responsibility is to act in the best interest of the individual.
For individuals with IDD and Autism, guardianship can encompass a wide range of decisions, including:
- Healthcare Decisions: The guardian may make decisions regarding medical treatments, therapies, and routine healthcare, such as managing appointments or advocating for necessary services.
- Living Arrangements: The guardian may help choose a safe living environment that suits the individual’s needs, whether that’s at home, a group home, or another supported living facility.
- Financial Management: For individuals unable to manage finances, the guardian might handle tasks such as paying bills, budgeting, and managing government benefits.
- Education and Employment: The guardian might also be involved in making decisions about educational programs, vocational training, and employment opportunities that align with the individual’s capabilities and interests.
The types of guardianship can differ from one state to another. It’s a good idea to talk to your special needs planning attorney and financial advisor, and to check out your state’s guardianship association or advocacy group for information that’s specific to where you
live. In California, you can use sites like Path-Now.com to find attorneys or advocacy groups.
Here are the various types of guardianship you should know about.
- Full Guardianship: The guardian has comprehensive decision-making authority over the ward’s personal, financial, and medical affairs. In this type of guardianship, the ward’s ability to make their own choices is greatly reduced.
- Limited Guardianship: In this case, the guardian’s powers are restricted to specific areas, allowing the individual more freedom in other aspects of their life. This type of guardianship promotes greater independence for the ward.
- Temporary Guardianship: Often established in emergencies, this arrangement allows for a short-term guardian to make decisions on behalf of the individual until a more permanent solution is found.
- Plenary Guardianship: This is the most complete and unrestricted form of guardianship. In this setup, the guardian holds complete control over every aspect of the ward’s life.
Alternatives to Guardianship
First, not everyone with special needs requires a guardian. It all comes down to the person’s specific situation and what kind of support they need. Some might need just a little help, while others might need more extensive support.
Guardianship can be as simple as arranging rides, or it could cover bigger decisions like organ donation and employment. It’s important to figure out what makes sense for each individual, whether that means having limited guardianship or something more all-encompassing.
For example, an individual with autism may struggle with social interactions or managing personal finances but be fully capable of working in a structured environment and living alone. Or an adult with a cognitive disability may need help with day-to-day tasks like cooking but still have the mental capacity to make decisions about their own healthcare.
Before pursuing guardianship, families and caregivers should consider alternatives that promote independence.
Many states offer alternatives to full guardianship which aim to give individuals with IDD and autism more autonomy while still receiving guidance.
- Supported Decision-Making: This model allows individuals to make their own decisions with the assistance of trusted supporters, fostering independence while providing necessary support. This model emphasizes empowerment and can help preserve the person’s autonomy while ensuring they have the necessary support.
- Power of Attorney: A person can choose someone to make specific decisions for them without losing the right to make other decisions themselves. Unlike guardianship, a Power of Attorney allows the individual to retain overall decision-making authority and only delegate certain responsibilities.
- Trusts: Special needs trusts can help manage an individual’s finances and government benefits without the need for a guardian, ensuring that the individual retains their eligibility for services.
Representative Payees: This arrangement allows someone to manage an individual’s Social Security or other benefits without assuming full guardianship.
The Process of Establishing Guardianship
According to data from the Guardianship Abuse, Fraud, and Exploitation Deterrence Program (GAFEDP), 15,492 active guardianship cases were analyzed in Texas from January 2019 to March 2022. Of these, 10,772 individuals were identified as having intellectual disabilities.
Understanding how the guardianship process works is essential to making sure their rights are protected and that they get the support they need.
The process of establishing guardianship for individuals, including those with IDD, involves several legal steps to ensure the individual’s rights are protected and that guardianship is necessary.
Here’s a breakdown of the typical process:
Step 1: Filing a Petition for Guardianship
To begin the legal process, a family member or friend who is concerned must submit a petition to the probate or family court in the state where the individual lives. They can get an attorney to help with the petition, while the court will assign a separate attorney for your child’s representation.
The petitioner, often a family member or a close friend, must provide reasons for the guardianship request and outline why the individual is unable to manage their own affairs.
The petition typically includes details about the individual’s condition, including medical or psychological evaluations that support the claim of incapacity. Additionally, it describes areas where the individual needs supervision, such as their ability to dress or feed themselves, make decisions about money, and whether they are capable of driving.
Step 2: Notifying Interested Parties
Once the petition is filed, notice of the guardianship proceedings must be given to all interested parties, including family members, caregivers, and, in some cases, the individual with IDD.
Step 3: Appointment of an Attorney or Guardian ad Litem
In many states, the court will appoint an attorney or a guardian ad litem (a neutral third party) to represent the best interests of the individual with IDD during the legal process.
Their role is to investigate the situation, assess the needs and preferences of the individual, and make recommendations to the court based on what is deemed to be in the individual’s best interest.
The GAL serves as an advocate, ensuring that the individual’s voice is heard and that their rights are protected during the guardianship process.
Step 4: Court Hearing
A formal court hearing will be scheduled, during which the petitioner must present evidence proving that guardianship is necessary. This can include medical records, testimony from healthcare providers, and expert witnesses who can speak to the individual’s mental and physical capacities.
The individual with IDD may also attend the hearing, and in some cases, the judge may ask them questions to better understand their needs and abilities.
Step 5: Court Determination
After reviewing all the evidence and hearing from all parties, the court will decide whether guardianship is appropriate.
Here are the factors a court must evaluate before granting guardianship over an individual.
- Whether you have explored the alternatives to guardianship.
- The extent to which your child is considered “incapacitated,” whether fully or partially.
- Your child’s preference regarding who they would like to have as their guardian.
- Whether having a guardian is in your child’s best interest.
If granted, the court will specify the type of guardianship (full or limited) and define the scope of the guardian’s authority.
In cases where limited guardianship is assigned, the court outlines the specific areas (e.g., medical decisions, financial management) where the guardian has decision-making power, allowing the individual to retain some control over other aspects of their life.
Step 6: Issuance of Guardianship Order
If the court grants the petition, a guardianship order is issued, giving the petitioner legal authority to serve as the guardian. The court may also require the guardian to post a bond, which acts as insurance to protect the individual’s finances.
The guardian is then responsible for making decisions in line with the scope of their authority and must act in the individual’s best interest at all times.
Step 7: Ongoing Court Supervision
Guardianships are typically monitored by the court on a regular basis. The guardian might be obligated to submit periodic reports outlining the individual’s health, living conditions, financial situation, and any major decisions made for them.
The court may also schedule regular reviews to determine whether the guardianship is still necessary or if the individual’s circumstances have changed, allowing for modification or termination of the guardianship.
Step 8: Termination or Modification of Guardianship
Guardianship is not necessarily permanent. It can be terminated or modified if the individual regains the ability to make decisions independently or if less restrictive alternatives become viable.
A petition can be made to the court to either terminate or alter the guardianship if it is deemed no longer needed or if the guardian is not properly performing their duties.
Legal Rights of Individuals with IDD and Autism
Even when placed under guardianship, individuals with IDD and autism retain several essential legal rights.
Right to Autonomy
Individuals with IDD and autism still have the right to maintain a level of independence in their daily lives. This means they can make choices about their preferences, such as what to wear, what to eat, and how to spend their free time.
Guardianship does not strip them of their personal agency; rather, it should support them in exercising their rights as much as possible.
Right to Participate in Decision-Making
Even with a guardian appointed, individuals have the right to be included in discussions and decisions that affect their lives.
This participation can involve having their opinions and desires heard in matters related to their care, treatment, and living situations. Including individuals in these conversations helps ensure their voices are valued and respected.
Right to Access Information
Individuals under guardianship have the right to be informed about their rights, the services available to them, and the reasons behind decisions made on their behalf.
Access to this information empowers them to understand their situation better and enables them to advocate for their own needs and preferences.
Right to Privacy
Their personal and medical information must be kept confidential. This means that guardians and caregivers should respect their privacy and ensure that personal details are only shared when necessary for their care or as required by law. Protecting their privacy helps maintain their dignity and trust.
Right to Advocacy
Individuals with IDD have the right to seek support from advocates who can help them understand their rights and navigate the complexities of the legal system. Advocates can provide guidance, representation, and support, ensuring that the individual’s needs and preferences are communicated effectively.
Final Thoughts
If you’re raising a family member with disabilities or autism, you’ll want to start thinking about what’s next when their 18th birthday comes around. A guardianship might be necessary to make sure your child is taken care of as they grow into an adult, based on their needs.
Dealing with guardianship law isn’t easy. A lawyer who knows their way around guardianship can guide you through the rules and the process. Consider looking for a family or probate lawyer who’s worked with individuals with disabilities. To find one, you can register an account at Path-Now for free.
Path-Now is a platform designed by Adjoin, a nonprofit organization based in California to connect individuals with IDD and autism to relevant service providers. It allows users to create a free personalized profile by answering questions about their needs and preferences.
Our platform then uses this information to custom-match them with service providers in their local area, offering services including legal assistance. It aims to fill the gap in accessibility by providing a secure, easy-to-use, and safe system for people to find and connect with providers who specialize in working with individuals with disabilities and autism.
