|Last revised 12/9/2016|
The conservation process may look daunting at first, but you only have to do a bit at a time and not know the whole process. You can do it step by step. At the bottom of this webpage is links to California Conservatorship Timeline, all the forms and how to fill them out. You can also get to these webpages through Legal in the above menu bar.
Why Conservatorship or Guardianship of People with Intellectual and Developmental Disabilities Is Important
Representation of your Adult Child with Disabilities during initial Court Determination of Conservatorship
Medical, Health Insurance Portability and Accountability Act (HIPAA) and a Non-conserved Child with Disabilities
Petitioning the Court for Conservatorship but Refusing to be the Conservator(s) or Found not fit to the Conservator(s)
Currently these webpages/instructions will explain filling out the forms, filing, preparing and going to court and filing the conservatorship plan for conservatorship of the “person” only and not of the “estate”.
The forms and Probate Code cited are from California. If you are from California, doing conservatorship of your disabled adult/child by yourself will be straight forward following the instructions on this webpage, the California Conservatorship Timeline webpage, and the form webpages which will have examples of how to fill out the forms.
Out of state parents should be able to use these webpages also. The Probate Codes and forms to file will be different but the process and rights will be very similar. The process is the same: you petition for conservatorship; the court’s investigates; an independent attorney is assigned for your adult/child, a hearing; the judge’s decision, and then your plan for conservatorship. In other states, there is a good chance you will have fewer forms to fill out than in California.
In the future, I will tackle being a conservator and the yearly status report to the court.
Why Conservatorship or Guardianship of People with Intellectual and Developmental Disabilities Is Important.HIPPA does allow doctors and hospitals to share information if it is in the best interest of the patient. Some hospitals and doctors do not apply HIPPA correctly, so it is iffy.
If you have an unmarried adult child who is normal and suffers an accident that causes a coma or otherwise becomes incapacitated, do doctors and hospitals not share medical information and decisions with those parents? Unlikely. They need to do what is in the best interest of the patient.
If your adult child is raped or molested, it has to be proven that they did not give consent. If they are not able to understand or state that they did not give consent, then the perpetrator cannot be charged. If the person is conserved and the conservator has the power to control sexual contact, then the perpetrator can be charged. It is a good reason to conserve your IDD adult child.
How Conservatorship came to be for People with Life Long Disabilities like Autism.At one time parents of disabled children did not have to go through the conservatorship process. Conservatorship was primarily for older adults or people that suffered from a debilitating injury or disease. On August 21, 1996 Health Insurance Portability and Accountability Act of 1996 (HIPAA), Public Law 104-191 was enacted. HIPAA establishes a set of national standards for the protection of certain health information. HIPAA set in motion the need for parents to be court appointed conservators of their adult children if they wanted assured access to health information and ability to make medical decisions to help their children during medical situations. Right now there are a number of older adults with disabilities who became adults before HIPAA that are not conserved and are usually living with their parents. Depending on how high functioning they are, at some point in their lives they will probably be conserved.
Notice above I use the words “assured access”. Conservatorship gives legal rights to access health information and make medical decisions, but HIPAA does give the powers of medical providers the rights to give information and allow family members and friends to be a part of medical decisions without conservatorship if it is deemed in the interest of the patient. Think about if something incapacitated a normal adult child who was not married in the hospital. The doctors would most likely consult with family members if they were of sound judgement. This does not change if the adult child is mentally disabled or disabled since birth. This will be covered below under “Not Conserving your Child”. Regardless of whether or not you have conservatorship, you are at the mercy of the medical staff for information and medical decisions for any short term duration. The best strategy is to be friendly and nice but still advocate.
The Individual with Disabilities Education Act (IDEA) has a provision in the act that “Transfer of Parental Rights at Age of Majority” The age of majority is determined by state law so it will vary depending on state. link to Id “transfer rights” There is more information under “Not Conserving your Child” and the rights you may have or lose.
Much of the process, probate code, lines on the forms, and informational material and videos about conservatorship are geared toward conservatorship of older adults that have not had a lifelong disability that interfered with them taking care of their own affairs and guarding their rights. The conservatorships of older citizens still constitute the majority of cases.
Definition of ConservatorshipConservatorship is a legal concept in the United States of America. A conservator(s) or a protector is appointed by a judge to manage the financial affairs and/or daily life of another, due to physical or mental limitations, or old age. The conservator may be only of the "estate" (financial affairs), but may also be of the "person," wherein he/she takes charge of overseeing the daily activities, such as health care or living arrangements of the conservatee.
Conservatorship of Estate and PersonA conservator of the “estate” is limited to decisions on the financial affairs of a conservatee. The conservatee is substantially unable to manage his/her financial resources or resist fraud or undue influence. If the conservatee is deemed by the court to be able to perform some financial management, than those rights will be retained by the conservatee. The conservatee retains the rights of person.
A conservator of a “person” oversees and is responsible for the daily activities, such as health care or living arrangements of the conservatee. A conservator can be of both the person and the estate. Most disabled children turning 18 do not have enough of an estate to warrant conservatorship of an estate. The term estate encompasses the total property that is owned by an individual, their net worth. The size of the estate is different per state as to the need for a conservator of the estate and to the waving of court fees. This will be tackled specifically with California and maybe other states in time.
General Conservatorship, Limited Conservatorship and Temporary ConservatorshipGeneral Conservatorship is for individuals on the decline with little hope of them regaining their facilities to exercise their individual rights and manage their finances.
Limited Conservatorship is for individuals where there is hope that they will learn and grow and may eventually be able to exercise some or all of their individual rights and manage their finances. The court periodically reviews Limited Conservatorships assessing conservatee’s abilities and whether rights should be given to the conservatee or still be retained by the conservator(s). Generally Limited Conservatorship is for individuals born with disabilities.
Temporary Conservatorship is for individuals who are considered temporary incapacitated and have the potential to regain all of their rights in the future. (Injury from accident, or some medical incapacitation)
Different State Court Terminology for Conservatorship
Conservatorship/Guardianship/TrusteeSome states or jurisdictions refer to “conservatorship” as a “guardianship”, or even a “trustee”, instead of a “conservator”. On this website, “conservatorship”, “conservator”, and “conservatee” will be used to mean the above unless we are specifically talking about a state that uses a different term than that term will be used.
The meaning of “conservator” or “guardian” varies greatly by state. A “conservator” can be used for all designations or just refer to someone designated only over the financial affairs an individual. Depending on the state, a “guardian” can refer to someone designated only over medical decisions, or over a minor, or a court appointed professional guardian, or in some combination with conservatorship, or all designations. Confusing? Luckily, you only have to worry about the state you are in.
Conservatee vs WardAn adult under conservatorship is a "conservatee". A minor child under guardianship is a "ward”. I have found though that these terms are not used rigidly under conservatorship and are used somewhat interchangeably in that young adults are sometimes referred to as “wards”. Children can be referred to as “conservatees”.
“Ward” is used in conjunction with “legal guardianship” or “guardian”.
Turning 18 and ConservatorshipWhen your child reaches 18 years of age you have survived a lot. You hold two advantages going into conservatorship. You know your child better than anyone. Unless you have been a really awful parent, it is in the interest of the child, the court and other government agencies that you continue to be the main advocate for your child. This gives you a lot of leverage during the conservatorship process.
When a person turns 18, they become an adult and gain personal rights and responsibilities. Many people with mental disabilities cannot make good judgement about financial decisions, contracts, marriage decisions, medical and other life decisions. They can be vulnerable. This is when conservatorship becomes important. Conservatorship is not limited to mentally disabled individuals but they are the majority of cases.
Conservatorship is an investigation and process for determining how disabled an individual is, determining who the conservator(s) will be, and a granting of rights to the conservator(s) while balancing the rights of that individual that safeguard the individual from being taken advantage of with the least restriction on those rights where appropriate.
While it is important to have a process of checks when taking away the rights of someone and giving them to another, I think the process costs too much for families who have a mentally disabled child who has been disabled since birth or in childhood. Now all of a sudden it seems like you or your disabled child has to pay for you to continue parenting your disabled child.
The Rights of an Individual Under Consideration Under Limited ConservatorshipUsing California Probate Code Section 2351.5 as an example (The judge will be taking all below into consideration in his final judgement.):
2351.5. (a) Subject to subdivision (b):
(1) The limited conservator has the care, custody, and control of the limited conservatee.
(2) The limited conservator shall secure for the limited conservatee those habilitation or treatment, training, education, medical and psychological services, and social and vocational opportunity as appropriate and as will assist the limited conservatee in the development of maximum self-reliance and independence.
(b) A limited conservator does not have any of the following powers or controls over the limited conservatee unless those powers or controls are specifically requested in the petition for appointment of a limited conservator and granted by the court in its order appointing the limited conservator:
(1) To fix the residence or specific dwelling of the limited conservatee.
(2) Access to the confidential records and papers of the limited conservatee.
(3) To consent or withhold consent to the marriage of, or the entrance into a registered domestic partnership by, the limited conservatee.
(4) The right of the limited conservatee to contract.
(5) The power of the limited conservatee to give or withhold medical consent.
(6) The limited conservatee’s right to control his or her own social and sexual contacts and relationships.
(7) Decisions concerning the education of the limited conservatee.
(d) The limited conservator or any relative or friend of the limited conservatee may appear and oppose the petition. The court shall hear and determine the matter according to the laws and procedures relating to the trial of civil actions, including trial by jury if demanded. If any of the powers which must be specifically granted to the limited conservator pursuant to subdivision (b) are granted or eliminated, new letters of limited conservatorship shall be issued reflecting the change in the limited conservator s powers.
Legal Representation and Self Help Options
Representation of your Adult Child with Disabilities during initial Court Determination of ConservatorshipAt 18 years old a person gains rights and responsibilities and the parents are no longer legally responsible. During the conservatorship process an adult with disabilities will have to have legal representation separate from the parents or proposed conservator(s). If the disabled adult child has no estate or income the representation will be appointed by the court. If the disabled adult child has an estate of sufficient amount they will be charged for legal representation until the estate amount goes under a certain amount. The amount varies by state.
Pro-bono LawyerIf your family income/net worth is below a certain level you may qualify to have a lawyer to represent you pro-bono (work undertaken for the public good without charge). To find a lawyer and to find out if you qualify, contact your local bar association and/or visit http://www.probono.net/ to find links to pro-bono lawyers and legal aid organizations where you live. The regional menu link button at probono.net is located on the left column at the top.
Family Law Assistance or Facilitator in Court Houses and Legal Assistance OrganizationsThese are self-help services for family law matters and certain civil cases that are available for self-represented court customers who seek legal information and resources. Their intention is to give everyone access to the courts. They can go by many acronyms like ACCESS and are usually located in the court house itself. Similarly there may be Legal Assistance nonprofit organizations in your community.
They often have information in many languages. They can explain your legal options. They can give you tools to represent yourself in Court. They can show you how to fill out the legal forms, review your filled out forms, how to follow court procedures, and find resources or a lawyer.
They cannot represent you in court. They cannot help you if you already have a lawyer. They cannot help you with certain types of court cases, but can help you with conservatorship.
The amount of help you receive can vary widely. I have heard that often these assistance programs are swamped and that the people in them do not know much about conservatorship of an adult disabled child.
LawyerA lawyer is needed if your conservatorship will be contested or there are any legal issues or actions involving the conservatee (your child) or if you do not feel comfortable or have the time to represent yourself. Having a lawyer represent you does not necessarily make things easier. Like any profession the quality of lawyers varies. Regardless it is good to familiarize yourself with the process of conservatorship before hiring a lawyer as that will help you work with your lawyer. This website will help with that.
If you hire a lawyer make sure the lawyer gives you copies of all forms filed with clerk of court.
Document Preparers“A legal document assistant (LDA, also commonly known as "document technician," "legal document preparer," "legal technician," "online legal document provider" and "legal document clerk") in the United States is a non-lawyer authorized to assist with the preparation of legal instruments. Unlike a paralegal, legal document assistants do not work under the supervision of an attorney.”
https://en.wikipedia.org/wiki/Legal_document_assistant Document preparers do not represent you in court. In general what they will do is prepare all documents until you receive conservatorship, file the documents with the court making sure they get in in a timely manner, make corrections, and serve the notice of court hearing of conservatorship to individuals that need to be legally notified. These duties need to be spelled out in the contract you sign with the document preparer.
If you hire a document preparer make sure the document preparer gives you copies of all forms filed with clerk of court.
Personal Note: I used a document preparer for the conservatorship of my son since I did not know what I was doing but wanted to be involved in the process so that I could understand it and document it for this website. Given the information on this website you should not need a document preparer to go through the conservatorship process especially if you are in the state of California.
Reading Court Forms, Probate or Welfare Codes, and Amendments SimplifiedReading court forms, codes, and amendments looks harder than it is. The thing to keep in your head is that complex statements with qualifiers are like light switches on or off. Legality of something is either true or false and codes try and clarify whether something is true or false. If you do any computer or website coding and are familiar with cascading style sheets, understanding legal documents will be easy. There is plenty of computer coding that is a lot more complex than legal writing. Legal nested statements are similar to the “if then” statements which is basic computer code. Computer processing in a computer chip are just positive /negative or/off on switches.
You have to look at every sentence fragment, sentence, and paragraph in context of the whole document.
OK, still confused? Lets go to examples and the idea will become clearer.
The below is from California GC-310 Petition for Appointment of Probate Conservator form, from page 1:
c. (1) bond not be required because the proposed successor conservator is a corporate fiduciary
or an exempt government agency. for the reasons stated in Attachment 1c.
Like any form you check the boxes that are true, but notice there are two periods so that this section of the form can be one of two sentences depending on what is true. By marking the first box “bond not be required”, you are saying one of the two sentences that can be formed is true. So one simple sentence formed by marking two boxes as true is “bond not be required for reason stated in Attachment 1c.” You skip over the rest of the wording because they are false.
The other sentence is a little more complex with variations. By marking the box next to “because the proposed”, you are saying the first sentence is true. If you notice, there is a box by successor and a space that looks like where a box should be to mark for conservator. The reason there is no box for conservator is that conservator is always true and successor can either be true or false. So the second sentence can read one of two ways.
“bond not be required because the proposed conservator is a corporate fiduciary or an exempt government agency.” Or “bond not be required because the proposed successor conservator is a corporate fiduciary or an exempt government agency.”
This type of true/false sentence construction is common in legal forms for government courts.
California probate code involving conservatorship is fairly straightforward and rarely nested beyond two deep. Some laws like the IDEA have sections that are nested 8 deep with “and” or “or” statements making it more complex. As we go through the process of conservatorship applicable sections of the probate code will be copied with the explanation.
Conservatorship Forms and Probate CodeProbate Code stipulates the information that needs to be gathered and the process of conservatorship. In the first page footer of forms in California, you will find a list of probate codes relating to that form. You will also find the new or revision date of when the form was released. I imagine that in all states the forms have similar indications somewhere on the form. Here is an example of the footer from GC-310 form:
Form Adopted for Mandatory Use
Judicial Council of California
GC-310 [Rev. January 1, 2016]
Judicial Council of California
GC-310 [Rev. January 1, 2016]
PETITION FOR APPOINTMENT OF PROBATE CONSERVATOR
(Probate—Guardianships and Conservatorships)
(Probate—Guardianships and Conservatorships)
Probate Code, §§ 1820, 1821,
Some forms will cite probate codes within the form that directly relate to that portion of the form. Example from GC-310:
f. (Proposed) conservatee is is not developmentally disabled as defined in Probate Code section 1420.
As I go through each page of the forms that need to be filed for a limited conservatorship of a disabled adult/child “person”, I will have the relevant probate code in the page notes. Not all probate codes relating to the form will be in the page notes because some of the probate codes are relevant to “estate” or are specialized relating to only “Indian descendants” (native people).
Document Preparation NotesSome court local rules require that you two-hole punch at the top all documents to be filed with the court. Some people 2 hole punch the original signature document to identify it from copies. (Advice from local court clerk) The use of ever better digital scanning and printing can make it hard to determine the original from copies when filing.
Document should use 12 point font size.
The General Process of Conservatorship and What to ExpectYou or your representative files a “petition to be the conservator” of a person with the Clerk of Court’s Office. The Clerk of Court will figure out the date of the hearing far enough in advance to allow for other reports, investigations and needed filings to take place.
It is good to bring two to three copies of all petitions and forms filed with the Clerk of Court. If not you will be asked to make copies. My court office charges 50 cent a sheet for copies (2016). Try and find out ahead of time how many copies you will need of each form. This can differ between forms. Lawyers often bring copies for themselves, their client, the Clerk of Court and the actual Court depending on the form. Clerk of Courts are used to dealing with lawyers so if you are representing yourself, they may out of habit ask you if you have enough copies but since you are representing yourself you do not need another copy for another representative.
The Clerk of Court will stamp with date received and court stamp and return your copies. If the form is the initial “petition to be the conservator”, they will write a court case number. This number will be proposed conservatee’s permanent number for conservatorship following him or her in that state even if the conservator changes. You will fill this number in on all future filings of court forms involving the conservatorship. The number will look something like PCN-16-123456: PCN, Probate Case Number-1st year of petitioning-Case Identifier Number.
The initial filing will include or can include:
-petition to be the conservator of a person
-wavier of court fees
-other forms that will be signed by the judge. Forms will be titled something like “Order Appointing Probate Conservatorship” and “Letters of Conservatorship”
-doctors or medical certification of disabilities (can be filed later). Form will be titled something like “Capacity Declaration – Conservatorship”
The Petition to be the Conservator of a PersonWith the filing of this form you are asking the court to investigate and hold a hearing for your conservatorship of the proposed conservatee. You are asking for conservatorship of the person and/or estate if needed. You are stating why you think the proposed conservator needs to be conserved. You are proposing which rights should be retained by the conservatee and which rights over the person and/or estate should be granted the conservator.
Wavier of Court FeesWavier of court fees must be filed initially or you will be charged all court fees until the form is filed and approved by the Clerk of Courts Office. These fees include all court filing fees and future court investigative fees throughout the full term of the conservatorship. Court investigative visits are supposed to happen once a year but most courts are so understaffed compared to the number of people in conservatorship that it usually does not happen each year. Of course if you are paying court fees you may get visited once a year.
The waving of court fees should be based on the wealth and income of the person being conserved, the conservatee. It is in California. It should not be based on the wealth and income of the person(s) proposed or acting as conservators even if it is the parents. The parents do not have to be the conservator. The government removes the rights of parents and gives the rights to an individual at age of majority. From a parent’s point of view, you should not have to pay additionally to continue being parents to your disabled child just because they change chronological age but not developmental age. Similarly, if the court appoints a different conservator either other family member or a professional, they would not charge that party for the job of being a conservator. In fact for professional conservators, the court (or some government agencies, as this could vary depending on state) pays the professional conservator for individuals identified as disabled enough to need conservatorship, having no estate, and having no able or willing person to be the conservator. It is in the court’s interest to have any able parent(s) be the conservator of their disabled child that needs a conservator.
Waiver of court fees is decided by the “Clerk of Courts Office” not by the judge or in the court room.
If the disabled child receives Social Security Income (SSI) then they will automatically qualify for wavier of court fees as SSI recipients cannot have assets above $2,000. In California there are three ways to qualify for a fee waiver:
• If you are receiving public benefits, like Medi-Cal, Food Stamps (CalFresh), Cal-Works, General Assistance, SSI, SSP, Tribal TANF, IHHS or CAPI;
• If your household income, before taxes, is less than the amounts listed on Form FW-001 in item 5b; OR
• If the court finds that you do not have enough income to pay for your household's basic needs AND the court fees.
If the proposed conservatee has a First Party Special Needs Trust, that will be taken into consideration. A Third Party Special Needs Trust has to be declared but will not be taken into consideration for waiving of court fees. (See Special Needs Trust webpage on this website for an explanation of differences and further information.)
If a conservatee comes into a sum of money greater than the amounts to qualify for the wavier of court fees, the court will charge all prior court fees (a lien) and future court fees until the conservatee meets the qualifications to have his or her court fees waived again. You may have to file court fee waiver forms again, so ask.
Outside Medical Opinion on the Disability of the Proposed ConservateeYou will have a form, titled something like “Capacity Declaration – Conservatorship” that needs to be filled out by an appropriate medical professional verifying the proposed conservatee’s disabilities and the extent of them.
This can be done before the initial filing and filed with the “petition for conservatorship” or it can be filed later but before the hearing date.
Notification of HearingAfter the Clerk of Court has set the date for the hearing of the proposed conservatorship, certain people need to be notified. Who needs to be notified is determined by state law and should be on the form. This form is used to notify people that the court will hold public hearings to establish a conservatorship, establish rights to be retained by the proposed conservatee or given to the proposed conservator(s), approve a conservator’s accountings, and hear objections. Some of the people that will need to be notified are parents, siblings, grandparents, spouses (doubtful for a child with autism just turning 18), and the social service agency that your adult child is a client of.
A person(s) over the age of 18 must serve the “notice of hearing” either in person or by mail to all those designated to receive the notice. The person notifying the other people of the hearing cannot be the proposed conservator(s). The person doing this action must not have an interest in the conservatorship of the proposed conservatee. Neighbors and friends are fine. Relatives, doctors and nurses of the proposed conservatee are not.
Notice of Hearing must be completed and filed with the clerk of court before a certain number of days before the hearing, like 15 days.
Notification of Social Service Agency a Child with Disabilities is a Client ofThe social service agency that your disabled adult child is a client of has to be notified a certain amount of days before the hearing (like 30 days) so that they can file a report with the court. Generally the notification is sent to the head of the social service agency.
It is important that you talk to your social service worker about what will be in that report. It is not uncommon for the social service agency to propose that a mentally disabled adult retain the right to marry even if the current state that your adult child is in at 18 is far from what you would think of as having the ability to make that decision. They are optimistically thinking that in the future your adult child with autism may have the capacity to make that decision. My sense from talking to people is that the retention of rights like marriage is rote for the social service agency here in California. It should be a case by case decision depending on the adult child’s mental and emotional abilities to make such a decision.
If the granting of rights differs between your filing for the “petition for conservatorship” with the social agency and any other party, it will have to be resolved before the conservatorship can go through usually by a judgement of the judge.
In my opinion, something like marriage is a big step for even “normal” adult children at the age of 18. With marriage comes the possibility of the married couple having a child or a mentally disabled adult child being exploited. If an adult child with mental disabilities has the capacity to make the decision to marry and procreate, then many other rights should not be withheld like where they can live or if they have to attend school or transitional programs. It really questions if your adult child should be conserved. Realize that the granting and taking away of rights in conservatorship can be changed in the future.
What the Court does before the HearingThe court will make sure there are no serious errors in the forms filed. If there are, they will send them back to you to correct. Unfortunately, they may not tell you what the errors are.
The court will appoint a lawyer to represent your child with autism in court. This lawyer will review all the documents for conservatorship, meet with and interview the proposed conservatee, review the court’s investigation, and will testify on the proposed conservatee’s behalf in court as to what s/he thinks the proposed conservatee capabilities are, what rights should be retained by the proposed conservatee and what rights should be given to the proposed conservator(s).
A court investigator will review all the documents, interview the proposed conservatee and the proposed conservator(s), interview or receive feedback form other parties like a spouse and the social service agency, and write a report about their investigation. For a more detailed example of a court investigator’s duties you can read the California Probate Code 1826 on the Conservatorship Timeline California webpage.
You should receive this report before the hearing with enough time to prepare for the hearing. Read the report and note any conflict that may exist and that will need to be addressed in court. Conflicts like the retention and granting of rights between what you filed and what the social service agency filed will have to be resolved. This is why it is good to meet with your social service agency before the hearing.
You may have to argue in court for a right to be taken away from the proposed conservatee like marriage that the social service agency thinks the proposed conservatee should retain. Saying during the hearing “I argue or I object to the social service agency proposal that the proposed conservatee retain such and such right because ……..”
The Court HearingBefore the court hearing you may be asked to watch an introductory video about conservatorship. It will most likely be geared more towards the conservatorship of senior citizens.
Your case hearing will be in a lineup of other conservatorship hearings, most of which are for senior citizens. The courts tend to take the less controversial hearings first. Since conservatorship of the person of a young mentally disabled adult without much in financial holdings is usually straightforward, your hearing will probably be in the beginning.
For a hearing about the conservatorship of a developmentally disabled adult the court will determine:
1. the nature and extent of the mental disability and impairment of behavior.
2. ability to take care of himself or herself
3. the capabilities of the proposed conservator
4. try and resolve any conflicts
Not Conserving your ChildNot going through the conservatorship process is an option. When a child reaches the majority age in their state they gain the rights of an adult. The parents no longer have the rights as when the child was a minor. Parents are not obligated to petition the court for conservatorship. I have talked to at least one parent who went this route with their mentally disabled child with autism.
No matter whether an adult with autism is conserved, the school district still has obligations under the law until a disabled person reaches the age of 22. Social service agencies still have obligations under the law for people with developmental disabilities from birth until death. Anyone can advocate that government agencies fulfill their obligations.
Under the law the adult with autism should be asked if they would like their parents included in issues revolving them. Most adult children with autism, if they are capable of saying yes, will say yes to parents. For the most part, it is in the interest of the schools and social service agencies to include you because if you have been an active parent(s) in the child’s life you will always be the child’s parent(s). Schools and social service agencies must do what is in the best interest for the person with disabilities which usually means including the parent(s).
How this works in practicality really depends on what your child’s functioning capabilities are. If your child is acting out constantly and unable to sign their name, you are going to have problems or more specifically the school district will have problems.
The adult person with autism that I know about that was not conserved by his/her parent(s) could talk and understand some things but is not able to comprehend all aspects of an IEP or overall financial accounting. At an IEP, his/her parent(s) were included. When came time to agree with certain aspects of the IEP s/he was simply asked whether s/he still wanted to meet and work with such and such person who was a vocational teacher. S/he would agree. That is how the IEP would go, the same thing with an IPP, (the social service agency’s form of IEP). The social service agency had an outside accounting of his/her benefits from social security and personal and incidental spending. This adult with autism lives in a group home which also helps him/her negotiate his/her life.
Medical, Health Insurance Portability and Accountability Act (HIPAA) and a Non-conserved Child with DisabilitiesWhat about medical and HIPAA? There is a lot of misunderstanding around HIPAA.
If you have a normal adult child that, unfortunately, is in the hospital unconscious are the doctors unlikely to talk to you because you are not the conservator of your normal child? Unlikely. This does not change if you have a mentally disabled adult child in the hospital that is not able to make decisions for themselves. The doctor is obligated to have the patient’s best interest at heart.
If the doctor(s) and medical staff are not willing to confer with parents, it could be because they do not understand HIPAA, have decided against it, or that there is a hospital policy.
The biggest problem is dealing with health insurance companies, except Medicaid. Even if your adult/child with a disability is on your policy or you pay for their premiums, private health insurance companies will not speak to you about specifics unless you have a legal right, power of attorney or conservatorship. This can make clearing up a billing problem a problem. The insurance companies will talk to doctors and hospitals so it is better to go through them.
From the US Department of Health & Human Services website on HIPPA:
Does HIPAA allow a health care provider to communicate with a patient’s family, friends, or other persons who are involved in the patient’s care?
Yes. In recognition of the integral role that family and friends play in a patient’s health care, the HIPAA Privacy Rule allows these routine – and often critical – communications between health care providers and these persons. Where a patient is present and has the capacity to make health care decisions, health care providers may communicate with a patient’s family members, friends, or other persons the patient has involved in his or her health care or payment for care, so long as the patient does not object. See 45 CFR 164.510(b). The provider may ask the patient’s permission to share relevant information with family members or others, may tell the patient he or she plans to discuss the information and give them an opportunity to agree or object, or may infer from the circumstances, using professional judgment, that the patient does not object. A common example of the latter would be situations in which a family member or friend is invited by the patient and present in the treatment room with the patient and the provider when a disclosure is made.
Where a patient is not present or is incapacitated, a health care provider may share the patient’s information with family, friends, or others involved in the patient’s care or payment for care, as long as the health care provider determines, based on professional judgment, that doing so is in the best interests of the patient. Note that, when someone other than a friend or family member is involved, the health care provider must be reasonably sure that the patient asked the person to be involved in his or her care or payment for care.
The Health Insurance Portability and Accountability Act (HIPAA) Law Covering Disclosure and Protection of an Individuals Health Information§ 164.510 Uses and disclosures requiring an opportunity for the individual to agree or to object.
A covered entity may use or disclose protected health information, provided that the individual is informed in advance of the use or disclosure and has the opportunity to agree to or prohibit or restrict the use or disclosure, in accordance with the applicable requirements of this section. The covered entity may orally inform the individual of and obtain the individual's oral agreement or objection to a use or disclosure permitted by this section.
(a) Standard: Use and disclosure for facility directories -
(1) Permitted uses and disclosure. Except when an objection is expressed in accordance with paragraphs (a)(2) or (3) of this section, a covered health care provider may:
(i) Use the following protected health information to maintain a directory of individuals in its facility:
(A) The individual's name;
(B) The individual's location in the covered health care provider's facility;
(C) The individual's condition described in general terms that does not communicate specific medical information about the individual; and
(D) The individual's religious affiliation; and
(A) To members of the clergy; or
(B) Except for religious affiliation, to other persons who ask for the individual by name.
(3) Emergency circumstances.
(i) If the opportunity to object to uses or disclosures required by paragraph (a)(2) of this section cannot practicably be provided because of the individual's incapacity or an emergency treatment circumstance, a covered health care provider may use or disclose some or all of the protected health information permitted by paragraph (a)(1) of this section for the facility's directory, if such disclosure is:
(A) Consistent with a prior expressed preference of the individual, if any, that is known to the covered health care provider; and
(B) In the individual's best interest as determined by the covered health care provider, in the exercise of professional judgment.
(b) Standard: Uses and disclosures for involvement in the individual's care and notification purposes -
(1) Permitted uses and disclosures.
(i) A covered entity may, in accordance with paragraphs (b)(2), (b)(3), or (b)(5) of this section, disclose to a family member, other relative, or a close personal friend of the individual, or any other person identified by the individual, the protected health information directly relevant to such person's involvement with the individual's health care or payment related to the individual's health care.
(ii) A covered entity may use or disclose protected health information to notify, or assist in the notification of (including identifying or locating), a family member, a personal representative of the individual, or another person responsible for the care of the individual of the individual's location, general condition, or death. Any such use or disclosure of protected health information for such notification purposes must be in accordance with paragraphs (b)(2), (b)(3), (b)(4), or (b)(5) of this section, as applicable.
(i) Obtains the individual's agreement;
(ii) Provides the individual with the opportunity to object to the disclosure, and the individual does not express an objection; or
(iii) Reasonably infers from the circumstances, based on the exercise of professional judgment, that the individual does not object to the disclosure.
(4) Uses and disclosures for disaster relief purposes. A covered entity may use or disclose protected health information to a public or private entity authorized by law or by its charter to assist in disaster relief efforts, for the purpose of coordinating with such entities the uses or disclosures permitted by paragraph (b)(1)(ii) of this section. The requirements in paragraphs (b)(2), (b)(3), or (b)(5) of this section apply to such uses and disclosures to the extent that the covered entity, in the exercise of professional judgment, determines that the requirements do not interfere with the ability to respond to the emergency circumstances.
(5) Uses and disclosures when the individual is deceased. If the individual is deceased, a covered entity may disclose to a family member, or other persons identified in paragraph (b)(1) of this section who were involved in the individual's care or payment for health care prior to the individual's death, protected health information of the individual that is relevant to such person's involvement, unless doing so is inconsistent with any prior expressed preference of the individual that is known to the covered entity.
Petitioning the Court for Conservatorship but Refusing to be the Conservator(s) or Found not fit to the Conservator(s)It is possible that you could petition the court for conservatorship but not be the conservator in the end. This can happen if:
A) The judge does not think you are capable.
B) Someone else petitions the court for conservatorship and is designated by the judge to be the conservator.
C) You file the petition for conservatorship, the court’s investigation deems that your adult/child should be conserved and you decline or remove yourself from consideration.
The professional conservator and court are obligated to make decisions in the best interest of the conservatee which usually means that the parents still be included in the life of their adult/child. Parents also have the right to be heard at any hearing concerning the conservatorship of their adult/child. What you do not have the right to is to make any decisions on behalf or in regards to your adult/child that are legally binding.
I have never met anyone that has done “C”. The better course probably would be to not conserve your adult/child and work with your social service worker and agency.
Conservatorship of a Disabled Adult Child who is Out of StateSituations do arise where the proposed conservator(s) live in one state and the proposed conservatee lives in another state. The proposed conservatee can legally still be a resident of the other state where his parent (the proposed conservator(s)) lives. This can happen when the proposed conservatee is at a residential school or group home in another state.
There is the possibility that the conservatorship can happen in either state so contact the local county state court (most likely probate court) in both states to find out the best way to proceed. I would try to contact the court manager that handles conservatorship for the answer.
The probate court in which the proposed conservator(s)/parents are located may refuse to take the petition for conservatorship because the court will have to investigate a proposed conservatee in another state and find an attorney in that state to represent the proposed conservatee. This requires finding and hiring an attorney in the location where the proposed conservatee resides. Courts have limitations on the amount of money they will pay attorneys to investigate and represent the proposed conservatee. It is very possible that they would not be able to find an attorney out of their jurisdiction to represent the conservatee. This is a real possibility if the court fees are waived based on the proposed conservatee’s assets. If the court fees are not waived then there is a possibility of hiring a lawyer in the state of the proposed conservatee. Be aware that the lawyer in another state will most likely not be familiar with the forms and probate codes of the state in which the hearing will take place and may require more time than usual.
The state court where your proposed conservatee resides will have different rules, forms, and court fee waiver rules. You may have to travel and show up in court or hire a lawyer to represent you at the hearing. You may be able to phone in at the time of the hearing.
While going through conservatorship where the proposed conservatee currently resides may eliminate cost for the probate court where the parents live, it will mean an increase expense for the parents. There will also be the needed action of transferring the conservatorship back to the state the parents live in when the conservatee comes back to live in the parents' state.
There is also the option of waiting to do conservatorship until after your adult child comes back and resides in the state you live in.