What is Autism?
Autism Spectrum Disorder (ASD) is a complex disorder of brain development. ASD can cause difficulty in social interaction, communication, motor coordination, and sometimes physical health issues. The most obvious signs of autism tend to be noticeable between 2 and 3 years of age, and it affects boys five times more often than girls. It is estimated that 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the United States. There is no one cause of autism, and there are many types of autism. The research is not conclusive as to who gets it and why.
What is the capacity of an autistic individual?
Each individual is unique. On the autistic spectrum, many individuals have exceptional abilities and unique ways of viewing the world. There are others on the spectrum that have significant physical or mental disabilities and will never be able to live independently. It really depends on the individual. Typically, the parents are in the best position to know the capabilities and mental capacity of their child, and at some point after the child turns 18, decisions will need to be made by the entire family about the continuing care of an autistic child.
What are the rights of parents of autistic children who have reached 18 years of age?
For parents of children with autism who are about to turn 18, this can be a really confusing time. Many parents of disabled children assume that they will remain their child’s guardian for the child’s lifetime, but this is not automatically the case. Once your child turns 18, you are no longer that child’s legal guardian, and he or she has the right to make his or her own decisions, regardless of whether that child should have been under a guardianship or conservator arrangement. This applies to medical decisions, special education decisions, and ability to be bound to legal documents (such as a power of attorney or a lease, contract or credit card agreement).
What is the difference between a Power of Attorney document and a Guardianship?
There any many differences between a guardianship and a power of attorney. Look at the chart below and you can see that a power of attorney, although less expensive, and easier to create, comes with many risks and problems for both the parents and the adult-incompetent. The choice of whether a guardianship is appropriate is ultimately a decision that may need input from the entire family.
Power of Attorney
|A court-appointed guardian is a fiduciary (has a duty to serve the best interest of the ward) in both financial matters and life decisions of an incompetent.* The court must be persuaded that there are no “less restrictive alternatives” to guardianship, such as a POA. The guardian must prove that the incompetent person is incompetent in at least one important area of their lives. There must also be a present need for a guardianship. A person might not be able to handle their affairs independently, but may have a support network of friends, family and service providers that make guardianship unnecessary.||The agent has equal ability with the principal to handle assets, but cannot make medical decisions for the principal or have access to medical information, unless they are also the agent on a Health Care Power of Attorney document. Neither document gives the agent the power to make life decisions over personal matters.|
|In the event of a conflict between the ward’s opinion and the guardian’s opinion, the guardian should consult the ward and try to incorporate input from the ward. But the court will make the ultimate decision and can decide against the wishes of the ward, in favor of the guardian’s opinion, if the judge feels that the decision is in the “best interest” of the ward.||The agent in a POA is not a fiduciary per se, but instead a signatory. The principal cannot typically recover from the agent decisions that were made in good faith, but there is no “best interest” test in a POA.|
|A guardianship is comprehensive over both financial matters (estate) and life matters (personal). A guardian may determine where the person will live, what type of medical treatment he or she receives, and most other aspects. In certain situations, the guardian must obtain prior court approval before acting, such as sterilization or withdrawal of life-prolonging treatments. If the court feels that it’s necessary, it can also place the ward under the guardianship of the person with one guardian, and under the guardianship of the estate with another guardian.||A POA is not comprehensive, and instead only covers financial issues if they are explicitly spelled out as powers in the POA document. Some personal decisions can be addressed by also signing a Health Care Power of Attorney, but not all life decisions, such as education, will be covered by that document, and until the principal lacks the ability to voice his or her opinion on health care matters, the agent is not even consulted, and has no access to medical records, charts or files.|
|The Probate Court has oversight in a guardianship. The Court will review the actions of the guardian, and can remove or replace a guardian for cause. The Probate Court also gives permission for the guardian to make any large or unusual expenditures.||There is no oversight in a POA. The principal can change his or her agent at will and this leaves an incompetent adult open to the risk of someone coming into his of her life with ulterior motives, and taking advantage of the principal. An unscrupulous agent has the power to wipe out all of the funds of the principal. Recovering those funds would take time and expense.|
|Guardians are entitled to compensation from the ward for the work that they do on the ward’s behalf.||An agent in a POA has no compensation for the power that they exercise for the principal, unless that is written into the document.|
|Guardians represent a ward in all legal actions, such as the ability to accept or decline settlements and/or choose to pursue a claim. The ward does have the ability to make some decisions, based on the capacity of the ward.||The POA must be written to include all powers that would be necessary for legal representation. The agent does not have the “standing” that would be required to file a lawsuit, unless the POA gave them that right. The suit would still be brought on behalf of the principal who suffered damage.|
|There is often a surety bond in place for a guardianship, to protect the ward from loss.||There is no bond required for a POA document, which means that the entire funds of the principal are at risk.|
|A guardianship, if uncontested, can be a simple process where everyone in the family and the legal professionals involved are working to accomplish an outcome that is in the ward’s best interest.||A POA can be a simple document to create, is not very expensive, and can be accomplished fairly quickly.|
|If the guardianship is contested, it could be difficult, time consuming, and expensive. It can be highly emotional and can involve attacks on the potential guardians’ characters. The potential ward can argue that he or she is not incompetent (see definition below the table). If it gets very complicated, to the extent that the judge cannot make a decision about any of the potential guardians, the judge can appoint a professional guardian (a non-related attorney), and then no one is happy with the outcome.||A POA is not only a simple document to create, but also a simple document to revoke. Because of this, the risk of theft can be quite high. There can be complications if there are more than one agent in power at one time. There is no court involvement or oversight of a POA, and therefore no continuity of care if the agent keeps changing.|
|The process of obtaining guardianship involves filing specific forms with the probate court. At that time, a hearing is scheduled and notice of that hearing is given to all concerned parties (family members). After the hearing, the court will decide if a guardian is necessary, and whom that should be. If a guardian is appointed, the Court will issue Letters of Guardianship. The Guardian is then responsible for filing annually with the Court the financial accounting, and bi-annually, the Guardian’s Report. This report gives the Court information that it needs to determine the ward’s condition and whether guardianship should continue. The ward’s Last Will and Testament must be filed with the court as well. In 2014, the initial filing of a Guardianship for an Incompetent Adult in Montgomery County is $325.00. This is the filing fee, but the initial attorney costs can be substantially higher, especially if the hearing ends up being contested and drawn out.||A POA costs between $50 and $100 typically, and once executed, the principal can make copies to distribute to all 3rd parties who might need them (banks, financial institutions, etc.). A Health Care Power of Attorney is an Ohio form that should be available at most health care institutions and online. If you have an attorney prepare it for you, the cost is typically also between $50 and $100. If you revoke the POA, you must give notice to 3rd parties or they are not bound by the revocation. This can get confusing if you execute multiple POAs over time. A revocation of the document is roughly the same cost as preparing the document itself, and when you have multiples, this could get expensive over time.|
* incompetent – Defined by Ohio as: ”any person who is so mentally impaired as a result of a mental or physical illness or disability, or mental retardation, or as a result of chronic substance abuse, that the person is incapable of taking proper care of the person’s self or property or fails to provide for the person’s family or other persons for whom the person is charged by law to provide, or who is confined to a correctional institution within this state.”
What is a Special Needs Trust?
Generally, a trust is a legal plan for placing funds and other assets in the control of a trustee for the benefit of an individual with a disability. A “special needs trust” (SNT) is a trust that makes it possible for the beneficiary to receive extra income without losing valuable state and federal benefits. The assets in a SNT can’t be used to purchase goods and services that government benefits provide, without invalidating the trust, and putting government benefits at risk. Instead the assets are used for recreation, vacations, special therapies that the government doesn’t cover, paid companions, and personal items, among other things. A SNT is irrevocable, which means once it’s set up, you can’t change your mind and alter the trust or revoke it, and get the money back without restriction. Also, in a SNT, only the trustee, not the beneficiary, can control how the funds will be used. A pooled SNT is a great option for those persons whose funds are not so great as to warrant the cost of managing and maintaining a private SNT. Remember, the trustee must be able to separate those goods and services that the trustee is able purchase, and those purchases that will cause the trust to convert from a SNT to a general trust, thereby putting government assistance benefits at risk.
A SNT trustee cannot make life decisions for the beneficiary of the Trust. A trustee can only make financial decisions as to whether or not to pay for a particular good or service. Access to medical records and decisions about education, medical procedures, and where the beneficiary will live are decisions that are not up to the SNT trustee, but they are of interest to him or her because the trustee must decide whether or not to fund them, or if there are funds available in the trust, not whether or not they are in the best interest of the beneficiary.
So, what do we do next?
Every autistic individual is unique, just like every family. In many families, the decision as to whether or not to involve the court will depend on what the family dynamics are. The adult with special needs may have full-functioning capacity to create legal documents, and to make his or her own decisions. On one hand, that’s great, because it gives him or her the ability to live semi-independently and to grow as an adult. But on the other hand, as the adult expands his or her social circle and meets new people, that same high functioning capacity can put him or her at risk of someone taking advantage.
In the alternate, where there is a low-level of independent function by the autistic adult, the parents may have spent most of their lives taking care of all of the needs of a disabled child, without the need of government benefits or court involvement in the form of a guardianship. The question then becomes, “Who will take care of the child when and if something happens to the parents?” This is where the family dynamics become extremely important, because we’re looking to siblings, if there are any, and whether those siblings are capable of continuing that high level of care, both financially and emotionally, without the needs of a guardianship or government benefits.
There is also the option in Ohio of having a limited guardianship. A limited guardianship is either guardianship over the person or guardianship over the estate. A limited guardianship can also be for medical purposes only (that is to provide consent for medical procedures), or for placement purposes only (such as approving behavior plans or the use of psychotropic medications). A full guardianship (also called a plenary guardianship) takes away nearly all of the rights of the person, and there are some instances where that would not be appropriate. In fact, the court will look very carefully at the case when a plenary guardianship is requested to see if there might be a limited guardianship that would accomplish the ultimate goal, which is protecting the individual.
No matter which guardianship you believe your family needs, there are fundamental rights that a court will typically not take away from a ward, which include the right to decide to have an abortion, or the right to consent to sterilization. The ward can get married, but usually only with the guardian’s consent. The Court can prevent or nullify the marriage of a ward, especially if the marriage takes place without the guardian’s consent. A guardian cannot make a will or execute a power of attorney for the ward, but guardianship doesn’t automatically take away the right of the ward to make a will if the ward has the capacity to understand what he or she is doing. Voting is always a fundamental right, which is not taken away, even in a plenary guardianship.Autism information and statistics provided by www.autismspeaks.org. Please seek professional assistance with any questions or specific situations. ADVERTISING MATERIAL ONLY: If you need legal services, please seek professional counsel.