Over the last several years in our Special Needs Planning and Special Needs Advocacy practices, we have seen a significant increase in clients having a family member with high functioning Autism or Asperger’s Syndrome. Although not exhaustive, this article is intended to provide an overview of the common legal issues these families face.
School Age Services
If a school aged student is diagnosed with high functioning Autism or Asperger’s Syndrome (hereinafter referred to collectively as “Asperger’s”) and has special needs that rise to the level of requiring special education services, he or she would be classified and receive an Individualized Education Plan (“IEP”).1 The Individuals with Disabilities Education Act (“IDEA”) requires that the school district provide a classified student with a “Free and Appropriate Public Education” designed to meet the student’s “unique needs and prepare them for further education, employment or independent living.” Due to the unique nature of Asperger’s, these students are usually functioning at or well above their “typical” classmates academically. Thus, students with Asperger’s would most likely not be appropriate for many of the self-contained programs school districts offer for students with Autism. Consequently, students with Asperger’s are typically educated either in a mainstream or collaborative (also known as “integrated” or “co taught”) classroom settings. Nevertheless, students diagnosed with Asperger’s typically function well below the norm both functionally and socially. Commonly, this is also coupled with extreme anxiety in social situations and changes in routine, attention issues, and/or sensory dysfunction. This requires the school district to tailor a student’s IEP to emphasize the specific social and/or emotional needs, which impede the student’s ability to learn and to make meaningful progress. Without that specific tailoring, the student, at times, could become oppositional, be isolated from their peers, and/or perceived as a discipline problem. Regardless of the school district’s special education program, or lack thereof, the school district is still required to address a student’s unique learning needs through services and/or specific goals in his or her IEP and program.
Along with tailoring the IEP to a student’s unique needs, it may also be necessary to conduct a Functional Behavioral Assessment (“FBA”) that would possibly result in a Behavioral Intervention Plan (“BIP”). An FBA and BIP would allow a student with problem or difficult behaviors to remain in the mainstream setting and learn alongside their non-disabled peers. Their removal from the general education program to a more restrictive educational setting can only occur when the district has reasonably exhausted the tools available to them. For example, a student, due to impulsivity and lack of social skills, may call out of turn constantly and be disruptive in the classroom. Before removing that child from the classroom, an FBA and BIP would need to be put in place to attempt to remediate the disruptive behaviors. Nevertheless, there are times when a student, even with a BIP in place, just may not be able to be educated appropriately within their home district. If the committee responsible for deciding the student’s plan decides that this is the case, then the student may be educated in another program outside of the home school district in a program that can more appropriately address his or her unique learning needs.
The IDEA covers all “classified students” through the year in which the child turns 21 or graduates from high school, whichever comes earlier. The IDEA requires that by no later than the year a student turns 16, a transition plan be put in place.2 The transition process and plan allows the student to easily transition to life post high school. The transition process is extremely important for all students, but in the case of students with Asperger’s there are some specific issues that should be considered. For example, even though the student can be admitted to colleges due to his or her academic ability, does he or she have the requisite social and life skills to be able to survive the college environment? There are no IEPs in college, so the student must acquire as many of the requisite skills to be able to navigate the college environment before graduating high school. This is done through the transition process. The transition time is also very important for the student who may not be attending college. For example, many students with Asperger’s, due to their high intelligence quotient (“IQ”), may not meet the criteria necessary for guardianship or public benefits (more fully discussed below). If this is the case, an alternate plan must be put into place and prepared for in order for the student to be able to achieve their post high school goals and receive the services, programs, and supports they may require after graduation. Unfortunately, much too often in our practice, we see parents whose children did not have proper transition plans in high school, leaving the child and family with little or no support post high school. Often, this can be avoided simply by having an IEP that implements appropriate, person-centered transition services while the student is in high school.
Access to Public Benefits
Once a child with Asperger’s attains the age of 18, he or she may be eligible to receive public benefits. Public benefits are important because being eligible for them could open up an array of services. It may be difficult to access these important benefits due to the unique nature of Asperger’s that typically include a high IQ. It is important to understand that there are appeal rights if your child is initially denied for public benefits, which is often the case when dealing with demonstrating the Asperger’s disability. During the appeals process, a more thorough investigation is completed by the agency where parents can supply evidence to demonstrate a more complete picture of who their child is. The following is a brief overview of some of the more widely accessed benefits:
SSI: Supplemental Security Income (“SSI”) is a monthly payment made to individuals with low income and limited resources who are 65 or older, or blind, or disabled. The amount of the SSI payment varies from state to state because some states add to the SSI payment. The applicant must meet the following requirements to be considered disabled and therefore eligible for SSI: (a) if working, he or she cannot earn more than $1,000/month (this amount can change every year); otherwise the Social Security Administration will find that the applicant is not disabled; (b) he or she must have a physical or mental disability, or a combination of disabilities, that results in “marked and severe functional limitations;” and (c) his or her disability must have lasted, or be expected to last, at least 12 months.
SSDI: An individual with Asperger’s may also be eligible to receive non-means tested benefits through the Social Security Disability Insurance (“SSDI”) program. SSDI pays benefits to adults who have a disability that began before the age of 22. The Social Security Administration considers the SSDI benefit a child’s benefit because it is paid on a parent’s Social Security earnings record. For a disabled adult child to become entitled to SSDI, one of his or her parents must (a) be receiving Social Security retirement or disability benefits; or (b) have died and have worked the requisite amount of quarters necessary to receive social security benefits. SSDI benefits continue as long as the individual remains disabled. There is no work requirement to receive these benefits. Unlike the SSI program, benefits received under the SSDI program are not means tested, meaning that assets are not considered in determining eligibility. There are work and income limitations, which can be restrictive when considering a person with Asperger’s may be able to contribute to the workforce.
Medicare: Medicare is a federal health insurance program for people age 65 or older and for people who have been receiving Social Security disability benefits for at least two years. Typically, two years after one becomes eligible for SSDI benefits, they will also become eligible for Medicare benefits.
Medicaid: Medicaid is a health care program for people with low incomes and limited resources. It is a combined federal and state program and there are many state specific rules for eligibility. In most states, those who get SSI payments qualify for Medicaid. In fact, in many states, Medicaid comes automatically with SSI eligibility. In other states, you must sign up for it. Also, some disabled individuals can get Medicaid coverage even if they do not qualify for SSI.
SSI and Medicaid can be important benefits if one is unable to work and receives, or wishes to receive services through a state funded program or agency, including residential placement, day programs and other services. It is possible for a person with Asperger’s to receive a combination of SSDI, SSI, Medicare, and Medicaid benefits. Generally, as long as one receives $1 of SSI benefit, he or she will be eligible for Medicaid. If one is dually eligible for Medicare and Medicaid benefits, Medicare is the primary payor of medical expenses and Medicaid is the payor of last resort, meaning Medicaid will only cover expenses that Medicare does not cover.
Guardianship and Advance Directives
When any child attains the age of 18, they legally become emancipated from their parents regardless of whether they have a disability or not. At this time, parents no longer have decision-making authority over their children, including financial transactions and health care decisions. This is extremely distressing to most parents of young adults with Asperger’s. While their child is highly intelligent they may have extremely weak functional and/or life skills. Most parents feel that this leaves their child in a vulnerable position. Parents of children with Asperger’s must consider what happens when their child turns 18. Do they seek a guardianship from the court, or consider legal documents to assist their child in decision-making?
A guardianship is a legal proceeding where a court determines a child to be “incapacitated” and unable to manage his or her affairs. The person appointed as guardian is usually the child’s parent or sibling. Many state guardianship statutes are restrictive and cannot be tailored to the unique needs of a child with Asperger’s. Typically, a child with Asperger’s has worked very hard in their schooling and life skills to be able to succeed in adulthood and the last thing that a parent wants to do is take away complete decision making authority from their child. Further, a child with Asperger’s may present himself very well and the disability is not apparent. If a parent is considering a guardianship for their child it is important that the child’s doctors and/or psychologists be consulted. Also, the special needs attorney should meet with the child to determine, from a legal perspective, whether the child would qualify for a guardianship, or, in the alternative, other planning should be made.
The alternative to a guardianship is for the child to execute Advance Directives, which include a Power of Attorney and Health Care Proxy.
A Power of Attorney is a statutory document, usually with state-specific requirements, that allows an individual to designate one or more individuals (usually the child’s parents and/or siblings) to assist them with financial decisions. This document has powers granted to the agent, which can be tailored to the person’s individual needs. For example, the Power of Attorney can specify the agent’s ability to deal with education matters.
A Health Care Proxy permits a person to appoint an individual, again typically a parent or sibling, to assist in health care decision-making. This document should be sufficient to authorize the agent to make all health care decisions. It is important for the Health Care Proxy include HIPAA authorization, which allows the agent to access medical records.
It is critical that the child and parents meet with a special needs attorney when preparing these documents and not use standard forms found online, as these documents must be tailored to specific circumstances. Additionally, if the capacity to execute these documents is ever questioned, it helps when an attorney, specializing in special needs planning, oversees the execution of these documents. Further, it is important to understand that your child can revoke a Power of Attorney and Health Care Proxy; whereas, only the Court can only revoke a guardianship. This is an important consideration if your child is easily influenced by others.
Special Needs and Future Planning
As parents, there is nothing we hope for more than a crystal ball that would let us know what our child’s functioning level will eventually be. While we hope that our child with Asperger’s will be self-sufficient and/or not need to rely on public benefits for the services that they require, there is no guarantee that this will be the case. Unfortunately, there is no crystal ball. Thus, it is imperative that you plan for the worst, but continue to hope for the best. Not planning for the child’s future could be devastating to the child that you are trying so desperately to help. There are tools available to ensure that your child will be taken care of. It is strongly recommended that you take advantage of the opportunity to plan while you are still able to do so.
Typically when a parent of a child with a disability comes to our office for future planning we suggest certain tools. These include a Letter of Intent, a Will, and a Supplemental Needs Trust.
A Letter of Intent: In order to get into the planning “mode” we ask parents to think for a moment what would happen if they were to die tomorrow? Who would be equipped to step into their shoes and take care of their special child? Who knows the child’s likes and dislikes, their dreams and their fears? It is important for all parents of children with special needs, and even parents of typically developing children, to have a Letter of Intent which will help the people that will be caring for your child interpret your hopes and desires for that child. A Letter of Intent is not a document that is prepared by an attorney, nor is it a formal legal document. However, the people caring for your child will heavily rely on the letter after your demise. By compiling as much information about your child and his/her needs and your desires, you will be giving future care providers the knowledge and insight they will need to provide the best possible care for your child. Caretakers will not have to waste precious time learning how to manage and care for your child. This is not an easy letter to draft; it is very emotional and difficult. However, all parents must go through this very difficult step to ensure a well-planned future for their special needs child. Once you write the letter, sign and date it. Each year, you take it out and add to it (or revise it if it is on the computer) and sign and date the changes.
A Last Will and Testament: A Last Will and Testament is a legal document that provides instructions on how you want your assets distributed at your death. Why is it so important to direct how assets are to be distributed? When your child with special needs is no longer eligible for services from their local school district, most times the only way to receive the necessary therapeutic, residential, vocational, and educational services they require is through means-tested public benefits. These benefits, (for example, SSI, Medicaid, etc. more fully discussed above) not only require a determination of disability in order to be eligible, but an applicant must meet stringent income and resource levels. This means that if your child has more than, or inherits more than, the applicable income and resource levels they would not be eligible for public benefits. These benefits are typically the lifeline or services once your child’s school program is done. A Last Will and Testament is an important tool since it would ensure that your child with special needs would not inherit your assets directly, which may put them over the applicable public benefit levels.
A Supplemental Needs Trust: While public benefits cover many services your child may require as an adult, they do not cover everything. Additionally, most parents are not pleased with the fact that they have to disinherit their child with special needs in order for their child to access public benefits. Fortunately, there is a very important tool that loved ones can use to allow a child to remain eligible for public benefits, but also have the “extras” that you would want them to have. This important tool is the Supplemental Needs Trust, also sometimes referred to as a Special Needs Trust. A Supplemental Needs Trust holds assets for the benefit of the special needs child without those assets being included in determining eligibility for public benefits. Generally speaking, monies in the trust can be used to pay for items that are not provided by the public benefit system. For example, money in the trust can buy a television, or pay for a companion, or pay for a vacation. An attorney who specializes in the area of special needs planning is necessary when preparing this type of trust. There are different types of Supplemental Needs Trusts to consider and to review with your attorney.
Due to the unique nature of high functioning Autism and Asperger’s syndrome there are unique legal issues that affect this population. We hope this article has been helpful in giving you an overview of some of the common legal issues that we have seen in our practice.
Nothing in this article should be construed as legal advice. Please consult with an attorney before relying on the information contained herein.
1. There are some students with Asperger’s whose disability does not rise to the level of being a student who can be classified under the IDEA. If this is the case, there may be services available under Section 504 of the Rehabilitation Act of 1973 (“Section 504”). Due to space constraints, this article does not address Section 504 services or plans.
2. While Federal Law requires that the transition plan be in place in the year in which the student turns 16, some states have a requirement that the plan be in place earlier.