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Many parents of children with life-threatening food allergies know to contact the school’s administration even before the first school bell rings. The goal: To set up a plan to keep their child safe.

But starting a productive dialogue about creating a positive school environment—one that allows the child equal access to school programs--can be tough when the ground rules are unclear. As a parent, you can do a lot to help by bringing information to your school team about what the law requires. Then, instead of asking for special help, you can take on the role of helping the school to fulfill its legal mandate to its students.

In honor of National Nutrition Month, here is a quick overview of four available tools (from lowest to highest level of intervention) that you can utilize to protect your school-aged child with life-threatening food allergies, nutrition concerns and medical issues.

1.    Have an Emergency Care Plan (ECP). This provides a first level of protection for a student with a life-threatening allergy in emergency situations. Typically, an ECP only addresses how a school must respond if a child with an allergy has an emergency in school.

To obtain an ECP, you should reach out to your child’s doctor for a signed care plan to bring to the school which becomes the ECP. An ECP may read like doctor’s orders, written for the school to carry out. The ECP should include:

  • The allergens your child must avoid;
  • Symptoms that would require emergency care, such as use of an epinephrine auto injector;
  • Procedures for calling 911 and taking your child to medical care; and
  • Emergency contacts. 

Federal lawmakers recently approved a provision that will allow people with disabilities in the U.S. to save money without risking their government benefits. By opening new accounts established under the Achieving a Better Life Experience (ABLE) Act, they’ll be able to accrue up to $100,000 in savings without losing access to Social Security Disability Income, Social Security Income, Medicaid coverage, and any other government benefits that help with their care. Additionally, earnings and distributions from the account for qualified disability expenses would not count as taxable income to the disabled individual.
But what happens to that ABLE account savings when the disabled individual passes away? Any money left will go towards paying back the state for Medicaid and other public funding that was used. A more effective estate planning method is to establish a Special Needs Trust. This will ensure that the money goes to your family-- not to the government.

A Q&A With SGW’s Alex Hilsen, Esq. 

Alex Hilsen is an attorney and Certified Financial Planner at Sussan Greenwald & Wesler.  In the following interview, he answers some of the most common questions he has fielded lately from parents. 

Q: Who needs to think about estate planning and special needs trusts – everyone, or just parents who have children whom they expect will not live independently as adults?

A: Everyone with a child should have an estate plan. It lays out or directs how your money will be distributed and who should care for your children in case of emergency or death.  If a parent believes that his or her child may eventually qualify for governmental benefits, then that parent may want a special needs trust. That parent should think about creating it when the child is young.

Q.  Does it make sense to address trust and estate issues if you don't have a lot of money set aside right now?

A: Yes. You do not need to have a lot of income set aside to benefit from creating a trust or engaging in estate planning now. People often have assets they don't consider--i.e, through pension plans, work, life insurance policies--sources they may not be aware of.

Bullying can be a devastating experience for any child. When the child being bullied has special needs, serious and long-term consequences for the child may result. Fortunately, special needs children receive extra protection under the law. Parents can invoke the laws that have been written specifically to protect children with disabilities when instances of bullying occur.

Federal and state law requires that accelerated programs be made available to students with disabilities and that entry requirements for such programs not discriminate against students who require special services. Furthermore, if a student requires modifications such as extended time or a computer for taking notes, the school must provide those same modifications in any accelerated or gifted programming in which that child participates. It has been eight years since a letter issued by the Office of Civil Rights clarified this law for schools and parents. Despite the letter, confusion still seems to exist among parents and educators. However, the law is clear: Parents simply cannot be asked to choose between gifted programming and special education services or modifications that are designed to serve their child's individualized learning needs.

The laws that entitle students with disabilities to a free, appropriate public education include the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act of 1990 (Title II). A December 26, 2007 open letter from the Office of Civil Rights made clear that the Office of Civil Rights (OCR) and the U.S. Department of Education are committed to acting promptly to remedy violations of students with disabilities' right to participate in challenging academic programs such as Advanced Placement classes. A special needs student's academic program is required to be individualized. OCR has made clear that the requirement for individualized programming determinations for a student with special needs is violated "when schools ignore the student's individual needs and automatically deny a qualified student with a disability needed related aids and services in an accelerated class or program."

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