Legal Future Planning
In an ideal world, parents begin to plan for the future of their child with IDD from a very early age.
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When the child is under 18 and the parents are (presumably) young and healthy, future planning may simply look like having an emergency backup plan in the case of the unexpected incapacitation or death of parents.
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As the child approaches 18, more serious discussions are needed to understand the level of legal protections required upon reaching adulthood. Parents also need to begin to face the likelihood that their children will outlive them, and that alternate plans are needed.
Upon reaching age 18, a person is automatically granted the full rights of adulthood, regardless of their abilities or their relationship with their parents. It is only when a legal instrument (conservatorship, power of attorney, etc) is put into place that rights are transferred from the person to a parent or other adult such as a Sib or court-appointed guardian. In many cases, the person with disabilities does not require that their rights be transferred, but rather a model for additional support in key decisions is sufficient.
Exploring Legal and Legal-Adjacent Options
Model 1: Conservatorship
By default, when a person turns 18 in California, they are given decision-making authority for themselves, regardless of cognitive capability and living situation.
If an adult cannot take care of their needs like shelter, food, medical care, and finances, a conservatorship may be an appropriate option to ensure their safety and well-being. A common reason for obtaining conservatorship is that the individual with a disability is considered to lack the cognitive capacity to understand certain life decisions, their implications, or informed consent and/or are easily manipulated by third parties that may not be operating in their best interest.
A conservatorship is a legal proceeding in which the court evaluates the vulnerability of an adult who may be unable to take care of their needs, and a judge appoints a person to make decisions for the adult to care for and protect them and their finances. The person appointed is called a conservator and the person who needs the assistance is called the conservatee. A conservatorship removes the conservatee’s rights and assigns those rights to the conservator.
A conservator is often a family member or close friend of the conservatee, and the law gives preferences to spouses, adult children, parents, and siblings. If no one is willing or able to act as a conservator, a private professional conservator or a public guardian may be appointed. A private professional conservator, also referred to as a professional fiduciary, is a trained and licensed professional in California hired privately by an individual or their families to manage a conservatee's daily care, medical, and housing needs. The state may appoint the Public Guardian-Conservator Administration to provide conservatorship services if there are no suitable family, friends, or relatives to serve as a conservator and the individual needing help cannot pay the fees for a private professional conservator.
In California, there are different levels of conservatorship including:
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General conservatorship: Conservatorship where the conservator has all powers and responsibilities, except ones found unnecessary. Often for elderly people, but can also be used for younger people who have been seriously impaired, like in a car accident, for example.
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Limited conservatorship: Conservatorship for adults with developmental disabilities where the conservator’s powers are strictly limited to up to 7 specific powers based on the needs of the conservatee (see the next section for more information).
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Lanterman-Petris-Short Act (LPS)/mental health conservatorship: Conservatorship only for adults with mental illnesses listed in the Diagnostic and Statistical Manual of Mental Disorders such as schizophrenia, bipolar disorder, schizo-affective disorder, clinical depression, and obsessive compulsive disorder. A LPS conservator can give consent to mental health treatment, even if the conservatee objects.
There are also two types of conservatorship:
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Conservatorship of the person: Primarily used for people with intellectual and developmental disabilities and elderly persons without full cognitive ability to care and protect for the conservatee.
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Conservatorship of the estate: Primarily to protect the financial assets of conserved individuals with significant holdings.
Limited Conservatorship
A limited conservatorship is generally for individuals with developmental disabilities who cannot care for their own health, food, housing, finances and personal needs. In California, there are seven (7) powers that may be granted (some or all) to the conservator:
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Fix the residence or specific dwelling of the conservatee.
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Have access to the confidential records and papers of the conservatee.
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Control the right of the conservatee’s right to enter into contracts.
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Give or withhold medical consent regarding the conservatee.
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Make decisions regarding education of the conservatee.
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Consent or withhold consent to marriage of the conservatee.
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Control the conservatee’s social and sexual relationships
A petition for conservatorship must show a decline in 1 of 4 mental functions and render an individual unable to make or communicate decisions or to understand and appreciate the consequences of those decisions. The four mental functions are alertness, information processing, thought processes, and the ability to modulate mood and affect.
The conservatorship process is completed in probate court in the county where the potential conservatee resides. Required conservatorship forms can be found on the state or county probate court's website or at the court clerk's office. Once the application for conservatorship has been submitted, the ward is served with a copy of the application papers. Then, a court investigator is assigned to the case.
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The person proposed conservatee, the proposed conservator or co-conservators, and attorney(s)(if any) then appear in front of a judge on an assigned court date. A judge will make the determination or court order regarding which powers will be granted to the conservator based on the records or evidence presented in court during the hearing. Generally, these are medical records, doctor's reports, and other documents like Individual Program Planning (IPP) or Individualized Education Plans (IEP) requested as part of the conservatorship packet. Powers to consent or withhold consent to marriage, social, and sexual relationships of the conservatee are generally not granted in most conservatorship decisions.
One year after the conservatorship is granted, a court investigator will review the case to ensure the conservator is conducting their job appropriately and that the conservatorship is still necessary. After the initial first-year review, the case will be reviewed again every two years or as often as the court investigator deems fit.
An example of the required forms can be found here in the Superior Court of California County of Orange website. It is important to note that while these forms are used state-wide, the process to file for conservatorship may vary depending on the county in which it is filed. It is best to check with your local county court's probate division regarding the process.
Establishing Conservatorship
A conservatorship can be filed independently or with the representation of a family lawyer. If you plan to file without legal representation, it is best to participate in a self help conservatorship clinic before you start the process. Otherwise, if you plan to hire a lawyer, the lawyer can initiate and guide you through the process. If your sibling is a regional center client, your regional center may be able to assist with some of the documentation required in the conservatorship packet. For example, the court may want a copy of your sibling's Individual Program Planning to get better insight into your siblings needs.
Co-Conservators & Successor Conservators
Co-conservator is a term used when more than one person is granted conservatorship of the individual's person and estate. The number of co-conservators that can be appointed depends on the county that your sibling lives in. A judge can appoint two or more limited conservators to serve "jointly." If the judge appoints two limited conservators, both must agree to exercise a power. If the judge appoints more than two, a majority of the conservators must agree to exercise a power. If co-conservators are assigned, it is important that they work together. The judge has the power to replace one or both conservators if issues between conservators are causing the conservatee harm.
If a conservator is removed, dies, resigns, or for any other reason, a vacancy occurs, the court may appoint a successor conservator so the conservatorship can continue. The judge also has the power to terminate the original conservator's appointment and replace them with a new successor conservator.
The conservatee, their spouse or domestic partner, any relative or friend of the conservatee, or any interested person, state, or local entity may petition the court to appoint a successor conservator.
Conservatorship Assistance
Many non-profit and legal advocacy organizations assist with filing for a conservatorship.
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Bet Tzedek is a non-profit legal service agency that provides free legal services and offers a Self-Help Conservatorship Clinic in Los Angeles County for families who want to file for conservatorship on their own. The clinic provides legal information regarding conservatorship matters and assists families in preparing the required forms to file.
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Community Legal Aid provides free document preparation and assistance in filing for limited conservatorship in Orange County. Other counties may also have these types of services. Contact your local disability resource center for more information.
Some families may choose to hire a family law attorney to assist in the process. When looking for a family law attorney, a good place to start is by asking within your social circles or checking on social media community pages. The State Bar of California website also provides referrals to bar-certified lawyers. Additionally, the Judicial Council of California has published this handbook on conservatorships.
Conservatorship Considerations
We would like to acknowledge that a person is not presumed to be unable to care for their own needs solely due to a diagnosis of an intellectual, developmental, or other disability, and not everyone needs a conservatorship. We also recognize that conservatorship can be a highly debated topic within the disability rights arena, as it takes on the decision-making capability of another human being.
The information presented in this section is intended to provide knowledge so you can make the most informed decision on whether a conservatorship may be suitable for your sibling. Below are further considerations.
Additional considerations:
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The Spectrum Institute (link) is an organization in California whose mission is “...to promote access to justice for adults with cognitive and communication disabilities who are involved in guardianship and conservatorship proceedings and to promote viable alternatives to guardianship and conservatorship.” You may find it helpful to read about their perspective on alternatives to conservatorship.
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With Support and Without Court: Supported Decision-Making Handbook for Parents of Adults with Developmental Disabilities in California (link)
Other Support Models
If conservatorship is not the right option for your sibling or family, there are other models you may consider to support your sibling with important decisions including Support Decision Making, Power of Attorney, Advanced Healthcare Directives, and Authorized Representative.
Model 2: Supported Decision Making
Supported decision-making is a process that allows a sibling with disabilities to receive support from trusted people but ultimately maintains the ability to make their own decisions across different life domains. While it does not have the legal weight of a conservatorship, it offers an individual the support they may need with making financial, medical, social and life decisions without removing their rights. This model allows a sibling with a disability to identify support people (family, friends, and professionals), collectively called a Circle of Support, to help them make decisions. The Circle of Support agrees to help the sibling with a disability comprehend, examine, and communicate decisions about different aspects of their lives. For example, explaining the outcome of a particular choice or understanding medical information communicated by a doctor. Supported decision making does not involve a court process and can range from being very informal, to very formal through written agreements. A supported decision-making agreement can be attached to legal documents such as a Power of Attorney, Advance Healthcare Directive, and HIPAA Authorization.
Supported decision making tools and materials can be found here:
Model 3: Power of Attorney (POA)
Another tool that allows you to support your sibling and may be combined with supported decision-making, is Power of Attorney (POA). POA is a legal document that allows your sibling to appoint another person to act as their ‘attorney-in-fact’ or ‘agent’. More than one agent may be appointed at a time, or one person can be appointed as the agent and another person appointed as an alternate who steps in when the primary agent is unavailable. The agent has the authority to act on behalf of your sibling in relation to financial and legal matters. Only one of the four types of POA authorizes an agent to make healthcare decisions.
There are different types of POA agreements:
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General power of attorney: grants the agent decision making power over a wide array of financial matters.
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Limited power of attorney: grants the agent decision making power over a specific situation which is outlined in the document itself. For example, the sale of a home.
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Medical power of attorney (also called an Advance Healthcare Directive): grants an agent power to make health-care related decisions.
It is important to note that when the Power of Attorney agreement goes into effect can vary based on the type. For example, a Durable Power of Attorney becomes effective immediately after it’s signed and is viable until destroyed or revoked. A Springing Power of Attorney can be designed so it becomes effective starting on a certain date or upon a certain situation, such as your sibling becoming incapacitated as declared by a licensed physician..
Process for completing a Power of Attorney agreement:
In order to complete a POA, an individual must complete a standard POA form and have it notarized by a notary public or witnessed by two individuals who are over the age of 18 with capacity to enter into a legal contract (neither can be named as the POA). A notary public is a person who is appointed by the state government to serve as a witness to the legal signing of a document. The state of California provides a standard Statutory POA form that is available through many of the courts websites.
What is the difference between a POA and a limited conservatorship?:
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POA only extends to legal and financial matters. An Advance Healthcare Directive which is covered in the next section extends to medical matters. A POA allows the individual with disabilities to retain their decision-making power and receive assistance from the designated agent. The POA becomes effective immediately upon notarization. The POA can be revoked at any time by the individual.
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A limited conservatorship extends to many areas of assistance(legal, financial, dwelling, education, marriage, social, sexual) for the sibling with disabilities, as declared by the court. A limited conservatorship becomes effective immediately when the court makes its decision and grants decision making power to the conservator. In a conservatorship, the individual or any other interested party must petition the court for the conservatorship to be terminated. Only a judge can grant the end of the conservatorship or name a new conservator.
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Additional considerations:
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The Spectrum Institute (link) is an organization in California whose mission is “...to promote access to justice for adults with cognitive and communication disabilities who are involved in guardianship and conservatorship proceedings and to promote viable alternatives to guardianship and conservatorship.” You may find it helpful to read about their perspective on alternatives to conservatorship.
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With Support and Without Court: Supported Decision-Making Handbook for Parents of Adults with Developmental Disabilities in California (link)