Trusts and estates attorneys help clients plan to protect their most vulnerable loved ones. Most professionals in this area know about creating a special needs trust as part of the estate plan for a child or grandchild with a disability and understand about guardianships for an incapacitated person. Special or supplemental needs trusts provide funds to pay for expenses that can help take care of an individual with a disability—while not cutting off access to government benefits.1 Guardianships ensure that caregivers retain the rights to make essential decisions for loved ones with special needs who lack the mental capacity to do so. But many attorneys, upon learning about a child with a disability, stop their inquiries there.
If attorneys don’t know the basics about special education services and advocacy, they may miss out on opportunities to serve clients, protect client estates and help their beneficiaries. Without this knowledge, an attorney won’t be able to fully address the multitude of issues that can arise from caring for a child with a disability. Medical and educational expenses for a child with a disability can run from $50,000 to $100,000 or more per year. These expenses can drain even a generous trust, and parents must ensure that their children with special needs, to the extent possible, receive appropriate training about independent living and postsecondary options. Until age 21 or graduation with a regular diploma, whichever occurs first, a child’s public school district has a responsibility to provide these appropriate transition services.
We’ll review the basics of special education legal protections for children with disabilities and how advisors can identify issues that may require further attention. Knowing the right questions to ask and offering basic advice will help properly serve clients.
Suppose two clients, Ryan and Megan, both in their early 50s, meet with you to discuss their estate plan. During the meeting, you learn that the couple has two children, Lisa, 19, who’s in college, and John, 17, who’s in high school. In reviewing the parents’ assets, you note that they’ve established an account under Internal Revenue Code Section 529 to help pay for John’s future college expenses. The parents, however, aren’t sure that John will be able or prepared to attend college, although he clearly has the academic potential to do so. You ask why, and they tell you that John has Asperger’s syndrome and that he finds school very difficult. He’s failing many of his classes and is very withdrawn. The parents are worried that he’s not going to graduate from high school. They state that they’ve sought the help of many private professionals, but that school officials haven’t taken steps to help John. He was recently suspended for threatening another child and doesn’t want to go back to school. He hasn’t expressed any interest in a career and has no vocational skills or job training. The school has done no career planning for John.
An astute trusts and estates attorney will learn more about John’s situation. If John doesn’t receive appropriate services to serve his academic, social emotional and academic needs, he may not graduate from high school and may never pursue a career. His depression could become more debilitating. In addition, his lifelong care has the potential to pose a substantial drain on your clients’ estate. This situation necessitates careful planning. In the situation above, John’s downward spiral obviously greatly concerns his family, but the lack of progress also is the responsibility of his local school district, as John has a disability.
The Individuals with Disabilities Education Improvement Act (IDEIA), as most recently enacted in 2004, states that every public school district in our country has the affirmative obligation to provide a free, appropriate public education (FAPE) to every child with a disability until the student graduates or turns 21.2 A school district provides a FAPE when it offers “special education and related services tailored to meet the unique needs of a particular child, [which are] ‘reasonably calculated to enable the child to receive educational benefits.’” Courts and administrative judges generally measure educational benefit in the form of passing grades and advancement from grade to grade.3
The law gives parents detailed and specific rights under the IDEIA. For example, if a parent refers her child for special education services, the law requires the district to conduct specific evaluations of the child within 60 days after receiving consent.4
Even if a parent doesn’t refer a child, a public school has the affirmative obligation to conduct an evaluation if the child is suspected of needing special education or related services.5 This “child find” obligation extends to children “who are suspected of being a child with a disability ... and in need of special education, even though they are advancing from grade to grade...”6 Courts have held that a state’s child find duty is “triggered” when the school district “has a reason to suspect a disability, and reason to suspect that special education services may be needed to address that disability.”7
The law protects every child who requires special education and related services and has a disability in one of the IDEIA classifications. The classification categories include: autism, deaf-blindness, deafness, an emotional disturbance, a hearing impairment, an intellectual disability (formerly known as “MR”), multiple disabilities, other health impairments (which can include ADHD), an orthopedic impairment, a speech/language impairment, a specific leaning disability, a traumatic brain injury or a visual impairment.
Once a child is evaluated, a team of special education professionals must meet to decide if the child meets the criteria to receive special education services.8 If so, the team must develop an individualized education program (IEP). An IEP represents the “centerpiece of the IDEIA” and is a written statement outlining a plan for providing a FAPE.9
The IEP contains valuable information for special needs planning. It includes the present levels of academic achievement and functional performance and details academic, physical, management and social emotional needs. The IEP should also contain services and a goal for every special education need identified. It must contain:
(1) A statement of the child’s present levels of academic achievement and functional performance, including how the child’s disability affects the child’s involvement and progress in the general education curriculum (that is, the same curriculum as for children without disabilities); or
(2) A statement of measurable annual goals, including academic and functional goals designed to: meet the child’s needs that result from the child’s disability to enable the child to be involved and make progress in the general education curriculum and meet each of the child’s other educational needs that result from the child’s disability;
(3) A description of how the child’s progress toward meeting the annual goals will be measured;
(4) A statement of the special education and related services and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child, or on behalf of the child, and a statement of the program modifications or support for school personnel that will be provided to enable the child to advance appropriately toward attaining the annual goals to be involved in and make progress in the general education curriculum, to participate in extracurricular and other nonacademic activities with children without disabilities;
(5) An explanation of the extent, if any, to which the child won’t participate with children without disabilities in the regular class;
(6) A statement of any individual appropriate accommodations that are necessary to measure the academic achievement and functional performance of the child on state and district assessments; and
(7) The projected date for the beginning of the services and the anticipated frequency, location and duration of those services and modifications.10
Focus on Transition Services
An IEP must also contain transition services and goals, described below, which are absolutely essential for helping children with disabilities attain independent living. The IDEIA requires that, beginning no later than the first IEP to be in effect when the child turns 16, or younger if determined appropriate by the IEP team, the IEP must contain transitional goals and services that will facilitate movement from school to post-school activities. Specifically, the IEP must contain:
• Appropriate measurable postsecondary goals based on age appropriate transition assessments related to training, education, employment and, when appropriate, independent living skills; and
• The transition services (including courses of study) needed to assist the child in reaching those goals.
Transition services are quite comprehensive. The law defines them as a coordinated set of activities for a child with a disability that’s:
(1) designed to be within a results-oriented process focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation;
(2) based on the individual child’s needs, taking into account the child’s strengths, preferences and interests; and includes:
• related services;
• community experiences;
• the development of employment and other post-school adult living objectives; and
• if appropriate, acquisition of daily living skills and provision of a functional vocational evaluation.
Transition services for children with disabilities may be special education, if provided as specially designed instruction, or a related service, if required to assist a child with a disability to benefit from special education.11
A school district must, for example, include transition goals for the school to work program and progress reports for the student’s participation in the programs. The district must provide an appropriate, detailed formal report of the student’s school-to-work experiences. There must also be specific transition goals on the IEP to measure a student’s progress in a school-to-work program.12 Thus, in the example above, John requires a comprehensive, coordinated set of transition activities that include specific vocational experiences in addition to his academic program, including expanded community experience, acquisition of daily living skills related to employment and communication skills.13
Protections After Age 21
After a child graduates with a regular education diploma or turns 21, certain federal laws still protect him from discrimination, but don’t require a FAPE or services to the extent the IDIEA does. This is why special education advocacy before age 21 is so important. Section 504 of the Rehabilitation Act of 1973 provides that:
[n]o otherwise qualified individual with a disability in the United States ... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subject to discrimination under any program or activity receiving Federal financial assistance.14
To prove a violation of the Rehabilitation Act, a plaintiff must show that:
(1) he is an individual with a disability; (2) he is otherwise qualified to participate in a particular program; (3) he was denied that participation based upon his disability; and (4) the program receives federal funds.15
In addition, the Americans With Disabilities Act prohibits discrimination based on disability.16
Parents need to know that they have specific and important rights under the IDIEA to participate in the process, get notice of all proposed decisions and actions and give their consent to evaluations or the provision of services. Parental participation represents one of the fundamental tenets of the IDIEA. Parents also have the right to seek and review all of their child’s educational records, and school districts have the obligation to keep such records confidential.17
If parents disagree with a school district’s decision, they have the right to file for due process. This means that a school district must conduct a due process hearing before an impartial hearing officer appointed by the state. The hearing can take one day or last for months. When a parent files for a hearing, the child is granted pendency, which means that the last agreed-upon IEP must be in place.
Parents have the right to seek various remedies in an impartial hearing. They may seek compensatory or made-up services. They can’t seek money damages, but may be able to recover reimbursement for certain evaluations or services that a school district should have covered. Under the IDEIA, parents have the right to unilaterally place the child in a private school and seek tuition reimbursement. Parents have the burden to show that the private school is appropriate.
After due process, parents or the district may appeal, first, in some states, to a state administrative panel, then, in all states, to federal or state court. IDEIA contains fee-shifting provisions. If the parent prevails, the school district must pay attorneys’ fees.
Thus, for example, if a parent disagrees with the transition services provided to a child under the IDEIA, the parent may file for due process and seek a new placement or additional services.
At the client meeting, it’s important for the trusts and estates attorney to be able to spot issues and know where to send the parents for more information. Thus, if you learn that one of your clients has a child with a disability under age 21, advise your client of the basic right of a student to a FAPE and transition services. Attorneys should remind parents that they may request in writing, under the Family Educational Rights and Privacy Act, access to all school records and documents. Also remind clients to ensure that the school has an appropriate transition plan and services.
Attorneys who take the time to understand these issues will be providing a value-added service to their clients, which will enhance their relationships with those clients and lead to better representation and service in the future.
1. See Bernard A. Krooks, “Estate Planning & Taxation: Individuals With Special Needs,” Trusts & Estates (July 2011), at p. 30.
2. 20 U.S.C. Section 1412(a)(1)(A); Board of Ed. of the Hendrick Hudson Central School District v. Rowley, 458 U.S. 176, 179 (1982).
3. Walczak v. Florida Union Free Sch. Dist., 142 F.3d 119, 122 (2d Cir. 1998) (quoting Rowley, ibid. at 207).
4. 34 CFR Section 300.301(c).
5. 34 CFR Section 300.111(c)(1). See also 20 U.S.C. Section 1412(a)(3).
6. 34 CFR Section 300.111(c)(1); Dean v. School Dist. of the City of Niagara Falls, 615 F. Supp.2d 63, 71 (W.D.N.Y. 2009).
7. New Paltz Cent. Sch. Dist. v. St. Pierre, 307 F. Supp.2d 394, 400 n. 13 (N.D.N.Y. 2004); Regional Sch. Dist. No. 9 Bd. of Ed. v. Mr. & Mrs. M., 2009 WL 2514064, at *8 (D.Conn. Aug. 7, 2009) (finding that the Board didn’t discharge its Child Find obligations consistent with the Individuals with Disabilities Education Improvement Act when it failed to locate, identify or refer the student to a pupil personnel team).
8. 34 CFR Section 300.8.
9. Honig v. Doe, 484 U.S. 305 (1988).
10. 34 CFR Section 300.320.
11. 34 CFR Section 300.45.
12. See 34 CFR Section 300.320 (2)(i)(B).
13. See 34 CFR Section 300.43; 8 N.Y.C.R.R. Sections 200.1(fff) and 200.4(d)(2)(ix).
See also Pace v. Bogalusa City School Bd., 325 F.3d 609 (5th Cir. 2003) (adequate transition plan found that included a statement of desired adult outcomes, school action steps and family action steps for various areas of need, such as postsecondary education, employment, living arrangements, homemaking, financial/income, advocacy/legal, community resources, recreation and leisure, transportation and relationships).
14. 20 U.S.C. Section 794(a).
15. Section 504 of the Rehabilitation Act of 1973, 29 U.S.C. Section 794, 34 CFR Part 104 (“No otherwise qualified handicapped individual shall ... be excluded from the participation in, be denied the benefit of or be subjected to discrimination under any program or activity receiving federal assistance”). See www2.ed.gov/policy/rights/reg/ocr/edlite-34cfr104.html. Note that Section 504 also protects school-age children and can serve children with disabilities with an accommodation plan if they don’t qualify for special education services. For example, a child with diabetes may simply require accommodations of needing to leave class early to test blood sugar, rather than full special education services.
16. Title II of the Americans With Disabilities Act, 42 U.S.C. 12101-12213.
17. The Family Educational Rights and Privacy Act, 20 U.S.C. Section 1232g, 34 CFR Part 99 (requires confidentiality and allows access to student records). See www2.ed.gov/policy/gen/reg/ferpa/index.html.