FAQ: Special Needs Legal Planning
Families that have children with developmental disabilities need to think about the long term, lifelong needs of their children. If a child with special needs is not going to be able to support themselves in adulthood, and may need personal care and support as well, the parents will have to think about things like caregivers, financial resources, and other supports their child will need. Special needs legal planning is designed to help parents put the pieces in place that will best accomplish their goals.
Medicaid and supplemental security income (SSI) benefits from the government are a critical part of any long term plan for a child with developmental disabilities. A special needs trust allows parents and grandparents to provide money through inheritance, life insurance, or other means to help take good care of the special needs loved on to the end of their life.
This is a specially created type of bank account that allows a limited amount of money to be saved and used by a person with a disability that began before the age of 26. It is an important planning tool for many families that is used in addition to a special needs trust, and is one of the planning tools that may be used in preparing a special needs legal plan.
Special needs legal planning is primarily focused on providing lifelong support and resources for a family member with a disability, but in order to do that the entire family plan has to be considered. If a parent, and sometimes a grandparent or a sibling, dies without a will, the family member with the disability may accidentally wind up losing their government benefits. Even if that can be avoided, there is substantial extra stress and financial cost involved in "fixing" the problem of an inheritance that is not properly set up.
When an adult (a person age 18 or older) does not have the legal capacity to make the decisions necessary for their own care, the Court can appoint a guardian (in some states it is called a conservator) to make decisions on behalf of the individual. Many parents are appointed as guardian of their child with disabilities when they turn 18 so that they can continue to take care of them. Without guardianship, the parent may not be able to make medical decisions or even talk to their child's doctor, talk to the health insurance company, talk to schools or handle banking needs.
A supported decision making agreement (SDMA) is a contract between a person who is need of support and the people who have been chosen as supporters. The contract says that the person in need of support will seek help and guidance from the supporters when facing certain life decisions. The person in need of support may create a durable power of attorney and a medical release in conjunction with the SDMA. The contractual agreement can go a long way in formalizing what may have already been happening, but it is not the same as a guardianship in that the person in need of support still has all decision making power, including the right to skip talking to their support team if they choose. It is a good tool for some people with developmental disabilities, but is not good for everyone.
A Red Boot Lawyer is any of the great team at Parker Counsel Legal Services. Our attorneys are specially trained to work with families who children with developmental disabilities, and our focus is on these needs. When you work with a Red Boot Lawyer you won't just be getting documents, we will be looking at ALL the circumstances and resources that may impact your family so that we can prepare the best plan possible to meet the personal goals you have for your child. You may not see actual red boots on all our attorneys, but our founder has been wearing red boots all her life and her passion for helping special needs families carries through in everything the firm does.
We currently have locations in four states: Austin, Texas, Denville New Jersey, Easthampton Massachusetts, and Portsmouth New Hampshire. Many of our services can easily be provided anywhere in these states.
Your initial contact with us will be by phone or email and we'll ask you to tell us a little bit about what your situation is so that we can determine what type of services you need and how we can help. From there, we will set up a longer consultation with one of our attorneys and gather information and answer all the questions you may have. If you are unsure what to do, we will help you figure it out. In all cases we will try to provide an all in price for the legal service you need so that you can budget properly and not be faced with any unpleasant "surprise" legal bills. If the nature of your matter prevents us from giving a flat fee price, we bill hourly but will give you the best cost estimate we can and discuss all the factors that will influence the cost. Once we begin work for you, you will be able to contact us as often as needed as we work through your matter with you.
A guardianship is a court action that determines an adult person does not have the legal capacity (ability) to take care of themselves in one or more areas. If a person does not have that ability, then a court will appoint another person to act on that person's behalf, that is, make decisions regarding residence, medical care, and financial matters.
Sort of, but not really. When a court finds that a person does not have the capacity (ability) to take care of themselves in one or more areas, the court will appoint a person as guardian and charge that guardian with making decisions about the person's care in those areas. For example, if a person has a guardian over medical care, then the guardian will make medical decisions and give consent to treatments. The guardian can talk to the person about their wishes, but the actual decision making power lies with the guardian. Similarly, if a guardian has been appointed to manage a person's financial affairs, the guardian can talk to the person about how they want to spend their money, but the guardian ultimately has control over the use and management of the money. Technically the guardianship does remove the right of a person to make their own decisions in the areas covered by the guardianship, but the intent behind it is not punitive, it is because the person is not able to make decisions that will ensure they have appropriate food, housing and medical care. Without a guardianship, if a person was making a decision that would endanger them, no one would be able to step in and stop it.
It should cover only the areas in which the individual is not competent to make their own decisions. For this reason, some guardianships are considered "partial." For example, a person may fully understand their medical situation and be able to make reasoned decisions about their medical care and treatment, but be unable to determine when they are being taken advantage of by others, making them vulnerable to financial fraud. This person would probably have guardianship over personal or financial matters only. Some people do need a broad guardianship, but can retain the right to make decisions in certain specific areas, such as deciding where to live, or making employment decisions for themselves. Many people under guardianship do retain the right to vote and marry.
The guardian is responsible to make sure the person has access to food, shelter and medical care (or whichever areas the guardianship covers) and that the person has all available resources that they are eligible for. The guardianship should regularly visit and communicate with the person or their caregivers and determine whether all needs are met. If there are needs that are not being met, the guardian should attempt to locate resources to do so. The guardian will need to provide periodic reports to the court on the condition and well being of the person, and must notify the court of any changes or if the guardian cannot continue in that role for any reason.
A guardian is not responsible for personally providing financial or other support. A guardian is not required to take the person into their own home. A guardian is also generally not legally responsible for harm that the person may cause to others.
At age 18, children gain the right to self-determination and parents lose the right to have unrestricted access to medical and educational records and to make decisions on behalf of their children. Therefore, if your child will need a guardian, age 18 is when you should go to court. Sometime during your child's 17th year, make an appointment with an attorney to find out what the process is and prepare for the application. However, if you have not gotten guardianship at age 18, you can still seek guardianship at any time after that if it becomes apparent a guardian is needed. If a person under guardianship later develops the skills to care for themselves, the guardianship can be dissolved.
Once your child turns 18, parents lose all right to see educational and medical records, or to talk to doctors or teachers, unless the child has given permission. If you don't have guardianship, and your child won't or can't give permission for you to be involved, you may not be able to go to medical appointments, special education meetings, or handle bank or benefits matters. If your child needs medical treatment and is not able to independently consent to that treatment, care may be delayed while the medical practice figures out what to do. If your child is an inpatient in a psychiatric hospital and refuses to give consent to communicate with you, you may not be able to find out what is going on.
Developmental disabilities vary widely in their effect on the ability of individuals to care for themselves. Most of the time it is very clear whether or not a person is able to make their own decisions. But for some, the answer is not clear. And for some parents, the hope is that their child will continue to develop skills and while they may not be able to care for themselves at 18, they might be able to do so in later years. When considering guardianship for a young adult where the answer is not clear, here are things you should be thinking about: - does your child understand concepts well enough to make a decision, or are they dependent on you to tell them what they should do? - do you trust your child to know when to ask you for help? Does your child take your advice? - is your child vulnerable to outside influence? Would they do what a friend told them to do, even if you had told them it was a bad idea? - does your child understand money well enough to put aside what is needed to pay bills before spending on recreation? - does your child resist necessary medical treatments or does your child understand that doing things they would rather not do is required for medical treatment? All 18 year old's make bad decisions sometimes. The difference between an inexperienced decision maker and a person who lacks the needed mental capacity to make an appropriate decision is the ability to learn from mistakes, to understand when and how decisions have resulted in bad outcomes, and the ability to analyze and apply new information to situations. If your think that your child does not have the ability to do those things, a guardianship may be the best way to protect them from harm.
SSI: Supplemental Security Income for Adults
SSI is a federal program administered by the Social Security Administration (SSA) to provide monthly cash payments to people with disabilities who have little to no income and fewer than $2000 in assets. It stands for "supplemental security income" and is not the same as SSDI (social security disability income), which is a program for adults who become disabled after having worked and paid into the social security system. Children under age 18 can receive SSI, but family income is considered in the eligibility determination. Once a child turns 18, only income and assets belonging to the individual are considered.
An application can be started online, by phone, or in person at your local social security office. https://www.ssa.gov/benefits/disability/
Eligibility is based on two factors: financial situation and disability status. Disability, for SSI purposes, means that a person has a physical or mental condition that is expected to continue for at least a year or more, and prevents the person from holding employment sufficient to support themselves. Developmental disabilities frequently result in a disability for SSI purposes, but a diagnosis alone is not enough. Applicants must show medical, educational, or vocational evidence that they are not able to engage in meaningful work.
There are several types of information that may be needed to establish disability. Medical information, of course, will be needed - doctors, treatments, medications, etc will all be needed to establish that a physical or mental condition exists. The medical information will also establish the severity of the condition. In addition to medical information, some people may need to add other information in order to demonstrate that the person is not able to engage in meaningful employment. This could include documents from educational evaluations and special education reviews, information about attempts to engage in employment (if any), or statements from therapists and other professional providers.
If your child is under age 18, family income is considered when determining eligibility for SSI. If your child is 18 or older, ONLY the income the child earns is considered. Any support you provide in the way of housing or groceries is considered when determining your child's monthly SSI benefit, but family income is NOT considered to determine eligibility itself.