When Memphian Carol Greenwald learned her son Keith had Down syndrome, she was shocked.
No prenatal testing existed at the time, and he wasn’t diagnosed until two months after his birth, when Greenwald and her husband, Jim, saw a geneticist at the Child Development Center in Memphis. A test confirmed that Keith had Down syndrome.
After extensive research into Keith’s disability, one thing became clear: The Greenwalds needed to start planning for Keith’s future in case something happened to them.
“I went to conferences, I gathered information, and we learned about how to set up trusts that would provide for Keith financially, that would allow him to be able to maintain some of the services he might need through Medicaid or Medicare,” Greenwald said. “We set that up and waited to see what the future what bring.”
The Greenwalds’ concerns about the planning for special needs children are not unique. Data from a 2011 study from the Metlife Center for Special Needs Planning showed that 21 percent of those surveyed had set up a special needs or supplementary trust, 32 percent had begun setting money aside for the dependent’s lifetime needs and 49 percent had identified a guardian.
Martine Hobson, executive director of the Down Syndrome Association of Memphis and the Mid-South and mother of an adult daughter with Down syndrome, said education is key in planning for the future of special needs individuals.
“There’s a lot out there that you have to go through and evaluate,” Hobson said. “You have to get educated so that you can make the right decision for you.”
Audio slideshow by Josh Tucker
Parents or guardians of individuals with special needs may have to work with lawyers and financial planners to sort through options, such as special needs trusts, designed specifically for them. ABLE, an acronym for Achieving a Better Life Experience, allows individuals with special needs to save up to $100,000 without losing SSI benefits, and conservatorships allow judges to appoint guardians to help manage the health and financial affairs of people with limitations.
To set up a special needs trust, parents or guardians of individuals with special needs work with an attorney who has expertise in the area of special needs planning. Generally, an attorney will ask parents or guardians to provide information, such as details about the family member’s disability, and basic financial information about the person setting up the trust and the individual with special needs, prior to or during the initial consultation. The cost of setting up a special needs trust will vary, depending on factors such as attorney’s fees, the complexity of the trust and the overall estate plan of the individual creating the trust.
Most states will provide online applications for ABLE accounts, or families will work with a financial advisor to open an account. According to AbleTN.gov, the Tennessee Department of Treasury is working with other state agencies and treasuries, and ABLE TN is expected to be fully operational this year.
A conservatorship is established in court when a judge appoints a responsible person to care for an adult. This process requires court-ordered paperwork, a court-ordered investigator, a court hearing and a local center intervention.
Resources such as the MetLife Center for Special Needs Planning and the Down Syndrome Association also offer information and support regarding options for parents or guardians.
Hobson didn’t discover her daughter Laurie had Down syndrome until after birth, and when she did, didn’t immediately start planning. However, Laurie’s father set up a special needs trust, and Laurie’s brother can help oversee her finances.
“I see her working and living as independently as possible,” Hobson said. “For her, that would mean living on her own with some support. There are different agencies that provide different levels of support. I would want her to have the least amount.”
The Greenwalds took another route.
In 2005, Keith was deemed eligible for a Medicaid waiver — a program for adults with intellectual disabilities that provides staff services such as personal assistance and transportation. Keith now lives in a house near Greenwald, which he shares with two friends who also receive services through Medicaid waivers.
Greenwald said the trusts and waiver services will help take care of Keith, who is now 43, in the future. She said she hopes he’ll continue his job, computer class and other activities such as Special Olympics.
Special needs also planning is a fluid responsibility that often moves from one generation to the next.
Video by Patrick Lantrip.
Memphian Beryl Wight is transitioning into becoming the primary caregiver for her sister, Wendy, who has an IQ of 80. Wendy, 52, currently lives with her mother, whose memory is deteriorating.
“There’s a special needs trust that we’ve set up for Wendy, so when my mom passes away, money will go into a trust that will be for Wendy’s care,” Wight said. “I will advise the organization that has the money on how I want that spent, and Wendy will come and live with me and my wife.”
Wight said that the transition process has been enlightening.
“I’ve learned a lot from this process,” Wight said. “It’s taught me a lot of patience and compassion. When I was younger, I was always kind of afraid of the whole caregiver thing. It’s something that you have to grow into.”