School refusal, a significant, persistent refusal to attend school based in emotional distress, is more common than you think. It can be a terrible dilemma for a parent: You know your child needs to go to school, and you know she is not physically ill, but she still refuses to go and you don’t know what to do about it. She promises every night tomorrow she will go, but when school time approaches, she just can’t get out of the car, throws a tantrum or spends the day in the nurse’s office complaining she does not feel well. The school may be saying: “She’s fine; just send her in” or even threatening to call a truancy officer if you don’t. But it’s not that easy.

girlCoveringEarsDoes your child crash into walls? Does he cover his ears in a crowded amusement park or shy away from birthday parties? Does she seem insensitive to pain, or overly sensitive to sound or light?

When children have difficulty processing, or making sense of the sensory information they take in, they may have difficulty responding appropriately in a given situation or environment. When this difficulty is so severe that it impedes daily functioning, the child may be said to have a Sensory Processing Disorder (an "SPD") also known as Sensory Integration Disorder. An SPD may affect your child's ability to access his school education in numerous ways. For example, an SPD may affect your child's ability to focus, write, perform motor activities or participate in school social situations, such as lunch or recess. 

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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.

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