Q. My daughter, Hailey, has high-functioning Autism Spectrum Disorder (ASD), is severely learning disabled, and has a difficult time paying attention in school. We have attended Individualized Education Plan (IEP) meetings, and are aware that she is just not grasping remedial mathematics, reading, science, or social studies, and has failed most of her Standard of Learning (SOL) tests. Although she isn’t learning much and failing, she keeps passing to the next grade.
Based on how little she actually knows, we’re concerned for her future. If she graduates from high school, I honestly think that her social and learning deficiencies may make it difficult for her to leave our home and be independent, and work a job where she could afford to live on her own. What we are most concerned about is, if something happens to us, what will happen to her? What kind of planning can we do to ensure our daughter is taken care of in the future?
A. Sometimes, despite our best efforts to advocate for our children, children with mental or physical disabilities are not learning enough to succeed in school, and slipping through the cracks. And that doesn’t bode well for them being independent and earning living wages in the future.
As far as your daughter’s situation in school, luckily, the United States Supreme Court recently made it easier for parents of special needs children to ensure that their children receive an appropriate education. In fact, in Endrew F. v. Douglas County School District, a unanimous Supreme Court made it very clear to educators that they are required to educate a disabled child more than just enough to help them “get by.”
Endrew is a young boy with autism who filed suit through his parents against his Douglas County, Colorado school district, under the Individuals with Disabilities Education Act (IDEA). Similar to your daughter’s situation as you described it, the public school Endrew was attending was doing just the minimum to get him from grade to grade and he wasn’t really learning anything.
Over time his parents grew increasingly frustrated and eventually removed him from public school and enrolled him in a private school, where he made great strides. After years of litigation over Endrew’s claim, the Supreme Court ruled in favor and held that in order to comply with the Individuals with Disabilities Education Act (IDEA), a school must give a child an IEP that has a chance of actually working. In Endrew’s case, the district ended up reimbursing his private school expenses.
IDEA is the Foundation of Special Education
Based on the outcome of the Supreme Court case that resulted from Endrew F. v. Douglas County:
•Educators will now be on notice of what their education obligations truly are, and parents will be able to negotiate these education plans from a position of strength.
•The Supreme Court unanimously rejected a “bare minimum standard.” Instead, the Court said that schools must provide an IEP that is “reasonably calculated to enable a child to make progress (in his/her education) appropriate in light of the child’s circumstances.”
•A school has to do more than the bare minimum when creating an IEP. The school is required to work out an IEP that actually has a chance of educating a special needs child, and if it doesn’t work, change the IEP so it actually has a chance of working. For Endrew and children like him, this can even mean a public school system paying for a private school education.
For most children, the standard system works. But for those children that face challenges, schools are now going to have to work harder to help them.
What Happens After Graduation? – When a Special Needs Adult Child Cannot Support Him or Herself
You are not alone in your concerns about your special needs child living with you after she completes school. In fact, according to a study cited in Disability Scoop, since leaving high school, the vast majority of young adults with autism — nearly 9 in 10 — have spent at least some time living with a parent or guardian. And most have never tried another living situation.
“As the prevalence of ASDs continues to rise, so too does the number of young adults transitioning into adulthood,” wrote Kristy Anderson of the University of Wisconsin-Madison and her colleagues in their findings. “The evidence presented in this study suggests that the vast majority of this population will be residing in the parental or guardian home during the period of emerging adulthood.”
For the study, researchers looked at the experiences of 620 individuals with autism from across the country. Young adults on the ASD spectrum had “the highest rate of supervised living arrangements and the lowest rate of independent living since leaving high school,” the study found.
Planning for a Loved One with Special Needs
If your daughter with special needs will likely live with you for the long term, what would happen to her if something happened to you? In your situation, it is wise to consider creating a special needs trust. Also known as “a supplemental needs trust,” this type of trust preserves eligibility for federal and state benefits by keeping assets out of the disabled person’s name. Special Needs Trusts fall generally into these categories:
Third-Party SNTs that one person creates and funds for the benefit of someone else.
First-Party SNTs (also called d4a trusts) that are created for the person with special needs using that person’s own money. Now, people with disabilities can create their own first-party special needs trusts without having to rely on others.
Pooled third-party trusts are an alternative to setting up your own special needs trust if you can’t come up with a good choice for trustee or if you are only putting a small amount of money into the trust, but are not for every family.
Microboards are usually small, non-profit corporations, established by the family of a disabled child or adult, that are established to provide for the ongoing special needs of a disabled person.
Learn more about Special Needs Trusts here.
Ready to Start Your Special Needs Planning?
When it comes to special needs planning, we can guide you through this process. Please contact us to make an appointment for a consultation:
Fairfax Special Needs Attorney: 703-691-1888
Fredericksburg Special Needs Attorney: 540-479-1435
Rockville Special Needs Attorney: 301-519-8041
DC Special Needs Attorney: 202-587-2797
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About Evan H Farr, CELA, CAP
