Thursday, February 12, 2015

Delaware family celebrates new law for disabled

Rick and Amy Kosmalski of Bear wanted their 8-year-old daughter to be able to save for her education and other needs, just as their son could.
But a Medicaid rule prevented Kayla, who has Down syndrome, from having more than $2,000 in her name. Unlike her 2-year-old brother, Logan, Kayla couldn't use a tax-advantaged account to save money she received as gifts from relatives.
A new law changes that rule – and Kayla's future. On Tuesday, Kayla's family participated in an event hosted by Vice President Joe Biden to celebrate passage of the ABLE (Achieving a Better Life Experience) Act.
"She'll be able to save for and pay for the things that she needs to be the best person she can be," said Rick Kosmalski, a marketing manager at JPMorgan Chase & Co. "That's really what the ABLE Act does. It gives her more financial freedom in her life."
Amy Kosmalski said, "Now we'll finally be able to save for her future."
The Komalskis spent five years lobbying Congress for the law, signed by President Barack Obama. It allows eligible people with disabilities to establish ABLE accounts, which resemble qualified college-savings programs known as 529 plans, while protecting their eligibility for Medicaid and other federal benefits.
The accounts can be used to save for education, housing, transportation, employment training and other expenses. States still must take action to make the accounts available to residents.
Biden, speaking to advocates and parents of children with disabilities, said the law is "simply the right thing to do, but it's also in the economic interest of the country."
If it makes sense for families to set aside money in a 529 college-savings account, he asked, "Why in God's name does it not make as much sense for you to be able to do that to care for the needs of your children with disabilities?"
Biden, who represented Delaware in the Senate for 36 years, called "Princess Kayla" to the front of the room as he was speaking because of their home-state connection. Biden gave Kayla a stuffed animal, named after his dog, Champ, and signed her program. The Kosmalskis and a few other families met privately with Biden before the event.
"Kayla, like so many others here, has a chance at an incredibly bright future," he told the group gathered at the Eisenhower Executive Office Building.
Kayla, a third-grader at Cedar Lane Elementary School, loves music, dancing, swimming and shopping. She goes by "Princess Kayla" on her business cards, which include her Twitter handle, blog, email and Instagram account. She counts former Delaware Attorney General Beau Biden and Delaware Gov. Jack Markell among her Twitter followers.
Her parents' goal has always been for her to live a productive and independent life, have a job someday and contribute to the community. They spent the first few years of her life focusing on her health and meeting her basic needs, such as signing her up for Medicaid. It was "devastating" to learn that Kayla's efforts to save money would cost her federal benefits, Rick Kosmalski said.
"It's hard enough that she has medical problems that you have to deal with and understand, but then there's financial problems that you never considered," he said.
Rick Kosmalski is a National Down Syndrome Society board member and president of the 321foundation, a new nonprofit focusing on advocacy, education and support for people with Down syndrome.
The family's advocacy started five years ago with the National Down Syndrome Society's "Buddy Walk on Washington," a conference that brings the Down syndrome community together to push for key legislative issues.
The family held follow-up meetings in Delaware with members of the congressional delegation's staff. They also spent time tracking down people in other states who would lobby their own members of Congress.
"The issue at the top of the list was the ABLE Act," Rick Kosmalski said. "That was the thing that we saw to be the most achievable."
"Great moments" on the way to the bill's final passage include decisions by Rep. John Carney and Sen. Chris Coons to co-sponsor the bill last Congress, Kosmalski said.
But there were plenty of letdowns. Even as more co-sponsors signed onto the bill, that session of Congress ended, forcing the Kosmalskis to start over. They worried that would happen again last year as Congress delayed action until December.
But the House passed the measure 404-17 on Dec. 3 and the Senate followed suit, 76-16, on Dec. 16, just before recessing. Delaware's congressional lawmakers voted in favor.
The Kosmalskis were in the gallery for the House vote and watched the Senate vote on C-SPAN.
"It's so exciting," Rick Kosmalski said. "Everyone was taking screenshots of the TVs."
Coons, in a statement after the vote, said the law means families "will no longer need to choose between their family's present and their child's future."
The next step is for states to implement the law. Markell supports it and is awaiting federal guidance to implement it appropriately, said his spokesman, Jonathon Dworkin.
"We advocated for this law to help people with disabilities become more financially secure and embrace the opportunity to help implement it," Dworkin said in a statement. "It's also an important part of helping individuals to become employed and to receive the support they need in their employment."
Contact Nicole Gaudiano at Follow her on Twitter @ngaudiano.

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