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."

What can possibly get done in a fifteen minute parent-teacher conference? It can seem like a waste of time. It’s not enough time to hear all about your child’s progress, or even hear about all the subjects he or she will be learning. It is barely parentTeacherConfenough time to take a peek at a few samples of your child’s work which your teacher likely will have selected to demonstrate your child’s progress. The teacher might address--gently or not so gently--issues or challenges your child is facing. As much as parents care deeply about their child’s education—especially when they already are aware that their child has special needs including learning challenges—they often dread the parent-teacher conference. The best you can hope for is actually something well worth bringing about: The start of an open dialogue.

 How can you start that dialogue and make your parent-teacher conference the most helpful for your child? Here are a few suggestions:

--Let the teacher know you are open to hearing her comments—positive and negative. Your teacher can be your best ally in uncovering what your child is struggling with. You want to know if other children are teasing your child, or if your child misses social cues. Your teacher is more likely to tell you if she understands that you will not look to blame her as the source of the problem.

--Spend most of the time listening. Your teacher will most likely have given thought to the information she shares. Take notes.

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