On October 3, 11:00 a.m. - 12:30 p.m., Prosperity Life Planning will be hosting an event at the beautiful Amara Cay Resort in Islamorada, “Benefits & Tax Planning For Families With Special Needs.” Speaking about a cause dear to their heart, Karen Greenberg and Jaret Vogel will be there to help parents of special needs children or adults learn about tax deductions and other financial tools to help offset the costs associated with caring for someone with special needs.
Jaret told me that while visiting Amara Cay Resort with his family, he had a vision of seeing the beautiful conference room filled to capacity with people there to learn how to help families with special needs. Please help us spread the word of this event and help Jaret fulfill his vision.
Karen Greenberg is the mother of a child with Autism, and has been a public speaker on special needs planning since 1993. She is Director of Prosperity Life Planning, a not-for-profit corporation dedicated to teaching families of disabled children and adults ways to provide for a financially comfortable quality of life, while preserving eligibility for governmental entitlements, such as Medicaid and SSI. She has an MBA in taxation and is a Certified Financial Planner™.
Jaret L. Vogel, husband of Karen Greenberg, has worked in financial services for 32 years. In addition to developing the outreach of Prosperity Life Planning, he volunteers as Associate Director and Special Needs Advisor, and helps implement solutions for these families. He is also a Certified Senior Advisor, and Director of the Special Needs Tax Credit Alliance, Inc.
FROM MYSTERY TO MISSION: ONE MOTHER’S JOURNEY
They say “It’s like waking up in Denmark, and you don’t speak the language.”
That’s how Karen Greenberg felt after learning her second child, Ricky, was on the Autism spectrum. Ricky was born after a long, difficult labor, culminating in a C section. He was immediately diagnosed with hydrocephalus, a swelling of the cranium due to fluid build-up in the brain, a condition which was corrected surgically within the first 12 hours after his birth. Doctors told Karen and her husband, Jeff, to take a “wait and see” approach and be aware that this condition might result in learning disabilities and/or a development delay.
At 6 months, his parents sought a developmental evaluation, and at the advice of the Directions Center in Long Island, enrolled him in a county-sponsored pediatric infant stimulation program. Ricky was assigned a special education teacher and some physical therapy sessions several times per week. While his cognitive functioning was not significantly delayed, the local experts felt it was prudent to continually assess his development, and in-home services were offered without cost to the family.
Ricky exhibited fairly normal milestone progressions until age eighteen months, when he had his first febrile seizure. The pediatrician explained that febrile seizures were not uncommon in small children, but referred Ricky to a pediatric neurologist for an evaluation. The seizures continued periodically over the next year, sometimes accompanied by a fever, but sometimes with none, and Ricky was prescribed medications. Eventually the seizures appeared under control. He also developed strabismus, (crossed-eyes) which was eventually corrected surgically.
It seemed, despite the seizure disorder, Ricky appeared to make fairly normal progress until age two. At that time, Ricky seemed cognitively intact or even advanced, knew the alphabet and numbers to 100, could identify pictures and had a very good receptive word knowledge. He was also starting to form some words. But gradually, over the succeeding 6 months, his spontaneous verbalization decreased, accompanied by less ability to focus and increasing distractibility. “When did Ricky stop using words?” Ricky’s mom and dad would ask themselves.
Ricky also developed “delayed echolalia,” repeating over and over the same dialogues from favorite Sesame Street episodes or TV commercials. Thus, the dreaded diagnosis of Autism was confirmed by the development psychiatrist. Furthermore, the experts delivered other bad news. “Ricky would probably never be able to support himself financially, and would need help and direction for the rest of his life.” Karen recalls, “I can’t say that we were really surprised by the diagnosis, but the realization that Ricky would never be able to take care of his basic needs was particularly troubling.”
Karen and her husband Jeff, who was a developmental psychologist, felt it was important for one parent to be an “at-home presence,” so Karen established a home-based accounting and tax preparation business.
She had already earned her MBA in Taxation, and was trained as a Certified Financial Planner. “With all my years of training and experience, I did not know how to plan for the future of a child who would need a lifetime of support.” Karen recalls, “I had not encountered this situation in any of the hundreds of clients I worked with in my business. There were lots of books in the library about children with Autism, and I read of them. But there was not one book that could tell me how to prepare for his future.”
“I had a lot of trouble sleeping, and often lay awake for hours full of worry. One night I had a troubling dream. Ricky was sitting all alone, in a rocking chair, just rocking back and forth, and I recall waking up feeling so sad and full of despair. The next day, I took a long walk by myself, still affected by this dream. I think I spent most of that day crying. And then I had “a strong awakening.” I put on my “other hat” and examined the problem from a different standpoint. It was not until I thought about the problem from the professional side, and not an emotional side, that I began to formulate a solution.”
Karen went to the law library and researched case law. “I was looking for estate law court cases where a family member had a lifelong disability,” Karen recalls. It was there she found a case dealing with this exact situation, which was actually the predecessor to the current Special Needs Trust, (which was not a federal law until 1993.) She found an attorney who was able to draft a trust document, using language which appeared to be sustained under existing case law. “The case dealt with a trust established in the will of the parent, but I wanted to form this trust now, and have the ability to use it as a savings account for my child’s future.”
“I asked the attorney to make this a “living trust.” The attorney was surprised, as he had previously only drafted such trusts to be effective after the death of the parents, to receive an inheritance from the parent’s estate, but conceded that there was no reason why we could not do just that.” She then contacted a friend who was an insurance agent, and bought an insurance policy, a “second-to-die” life insurance policy, covering her and Ricky’s dad, to be owned by the trust. The agent was surprised also, as this type of product, which pays the death benefit after the second spouse’s passing, was usually purchased only to pay estate taxes after the death of the second spouse.
Karen recalled from her CFP training that this type of policy cost less than 2 separate policies. She then created an investment account, also owned by the trust, which grew over ten years, to a point where the investment’s dividends were enough to pay the $2,000 insurance premium, all on a tax-free basis. “For those first 10 years, I was determined to make monthly deposits to the trust account to cover the cost of the policy, and also add to the investment account.”
She designated her parents as the trustees of the trust, and her sister (and later her daughter) as successor trustees, who would look after the trust’s resources if Karen was unable to. Karen had used her combined knowledge, research and experience, to create an endowment for Ricky’s benefit, which will eventually provide a significant annual cash-flow for Ricky’s lifetime of care, after she and his father pass away. The trust also provides current income, if needed, to cover expenses and services not provided by New York’s Medicaid and SSI program.
After planning for Ricky’s future, she met other parents, who asked for her help to plan for their children. She joined the Autism Society of Nassau/Suffolk counties, serving as their treasurer for several years. She also created an educational nonprofit organization, Prosperity Life Planning (PLP) to educate and advocate through the planning process with area attorneys, benefit consultants, tax, investment, and insurance professionals.
Years later, Karen moved to Delray Beach, and with her 2nd husband, Jaret Vogel, reactivated PLP and set on a course to become a more visible organization. In 2006, Prosperity Life Planning received a $25,000 grant from the Certified Financial Planner Board of Standards. They used half of the funds to develop their resources, website, brochures, etc., and the other half to create a legal aid service, which paid for legal services for 12 families from area attorneys, who discounted their fees 70%, in order to “give back to the community” without working pro bono.
Since that time, Karen and Jaret have addressed thousands of families across Florida, counseled hundreds in their Delray Beach home office, and been featured in the media as nationally recognized speakers on special needs planning.
As a result of their experience working with families, many with special needs kids approaching 18 years of age, they recognized that parents were no longer the guardians of their 18 year old kids, and to remain their legal guardians would require an attorney and court services. In November, 2006, they attended a guardianship conference in Ft. Lauderdale, and during discussions, came up with the idea of a federal tax refund for the $5,000 cost of becoming legal guardian for an adult with disabilities. This idea became the seed of a new project, which could help millions of parents across the country for generations to come; parents who already had untold expenses caring for a child who needs extra supports.
Over the past 5 years, the couple has made great progress. They met with Congressmen in DC, collected hundreds of petitions, were featured in numerous TV and newspaper articles, and garnered the interest of former Congressman Robert Wexler and Congressman Ted Deutch.
In March 2011, House Resolution 878 was introduced in congress by Duetch. The “Special Needs Tax Credit Bill” is now being discussed in Congress, with 5 additional Congressman signing up in support as co-sponsors. The Bill has now been reintroduced in the current 114th Session of Congress as HR 1747.
So, from the birth of a little boy in Long Island, thousands of families have benefited from the experience of one mom, and hopefully millions of families will benefit if the Special Needs Tax Credit Bill is passed.
For more information on Prosperity Life Planning, visit their website:
www.prosperitylifeplanning.org. Or call Karen Greenberg for a free, 2 hour consultation at 561-638-6945.
To learn more about Special Needs Tax Credit and download a petition, visit:
www.specialneedstaxcredit.org, or call Jaret Vogel at 561-865-2921.