Parenting two sons with special needs became so demanding for Colleen Cenk two decades ago that she gave up her career in marketing to become a full-time advocate for her children. To make sure her boys were safe and healthy, she also set up a special needs trust that would provide for them in the future if she were unable to. “The important thing for a parent with a child with disabilities is knowing when you pass, somebody will fulfill the role you have filled,” she said. Some things have changed since she created the trust in 2007. She and her husband divorced four years later and her youngest son, who was diagnosed with a brain tumor, died last year at age 21. Her oldest son, who has Asperger’s syndrome is now 26 years old and living on his own. With each major change in her family’s circumstances, the 57-year-old Richland woman has needed to revisit her will and the special needs trusts she had put in place to make adjustments.
For parents who may be overwhelmed with the day-to-day care of a child with disabilities, establishing a special needs trust can be complicated. The primary purpose of a special needs trust is for people with disabilities to be able to pay for items that aren't provided by Supplemental Security Income or Medicaid. A properly drafted trust will allow the beneficiary to receive government benefits while still receiving funds from the trust.
As a trustee for special needs trusts, ACHIEVA Family Trust helps individuals with disabilities and families navigate the options to protect their futures. ACHIEVA recently teamed up with Downtown financial advising firm Hefren-Tillotson to hold a series of seminars on special needs trusts that will focus on an important gap that has until now been missing from the education toolbox — financial advising.
ACHIEVA and Hefren-Tillotson holds workshops around the country at no charge for those who want to learn more about special needs trusts and get professional guidance. The remaining workshop will be held 6:30 p.m. to 8:30 p.m. June 21 at Autism Connection of PA in Millvale. More will be scheduled beginning in September. “The component that Hefren-Tillotson will bring to the seminars is the financial planning and financial organization that is needed for families caring for special needs individuals,” said Darren Hucko, a vice president at Hefren-Tillotson. Often families believe they need a special needs trust, he said, but they should be looking at a comprehensive financial plan. “Our goal is really to help families with financial organization,” Mr. Hucko said. “That will vary. Some families will need guidance on budgeting and debt repayment. Other families may have different needs, such as beneficiary designations or taking steps to protect the financial plan already in place.
“That could be with life insurance or reviewing beneficiaries, guardians or trustees,” he said. “Many individuals do not understand the complexity that all the different areas have and they need to coordinate a financial plan.” While ACHIEVA has been around as an organization since the 1950s, the ACHIEVA Family Trust was established in 1998. ACHIEVA has about $115 million in assets under management in its trust. The trust itself has about 2,200 beneficiaries.
Hefren-Tillotson will not be managing trust funds. The financial services firm will only be working with ACHIEVA to educate families on how they can adjust their family’s budgets and finances to successfully fund a trust for their family members. “Many times people hear the word trust, they think you have to have substantial assets or substantial wealth to open a trust,” said Amy Strano, president of ACHIEVA Family Trust. “But people of modest means can access our services and and have a trust for their child. “We are designed to be accessible to families of all means,” she said. “The minimum to open a trust is $500.”
One of the reasons special needs trusts are so popular is they usually survive the death of the donor, providing a low-cost way to manage the donor’s assets for the special needs person when the donor is gone. Many people make the mistake of leaving assets in their will to people with special needs, which could put the disabled person’s benefits in jeopardy. In order to qualify for SSI, a beneficiary can have only $2,000 in his own name. But the government allows special needs individuals to qualify for SSI with no limit on wealth as long as the assets are placed in a special needs trust. While the individual is alive, the funds in the trust are used for his or her benefit. When he or she dies, any assets remaining in the trust may used to reimburse the government for the cost of his medical care.
People who attend the June seminar also will hear more about the difference between special needs trusts and PA Able, which was rolled out last year by the Pennsylvania Legislature. The PA Able Act was approved in part as an alternative to special needs trusts. People with disabilities and/or their families can open investment and checking accounts — up to $15,000 a year and $511,758 maximum — tax free without impacting government benefits. The state’s Department of Revenue manages the funds and provides oversight.
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