LAKE STEVENS — Emma Patterson, 13, already is planning for college. She wants to study art, work at Starbucks and have her own place in Seattle.
It’ll be an uphill battle for the energetic teen with purple streaks in her hair and an infectious smile. She has Down syndrome, a developmental disability and the most common genetic disorder in the U.S.
Emma has a solid start on her goals. The day before her 13th birthday, she watched Gov. Jay Inslee sign into law a bill geared toward letting people with disabilities live independently without losing public benefits. The legislation creates a work group to plan Washington’s version of the national Achieving a Better Life Experience (ABLE) Program, approved by U.S. lawmakers in 2014.
It’s something Emma’s mom, Amy Patterson, 45, has been pushing for at the federal and state level for five years. She’s president of the Down Syndrome Association of Snohomish County and home-schools Emma.
Emma had the ultimate civics lesson this year, Patterson said. The teen testified in front of state lawmakers, urging them to approve the program. The bill passed 89-8 in the House and 46-2 in the Senate. Inslee signed it Friday.
The ABLE program creates a tax-exempt account for people with disabilities to save money, similar to federal 529 plans for college savings, according to the bill. Having more than $2,000 in cash or savings normally disqualifies people from public benefits like supplemental security income, food stamps or Medicaid.
People can save up to $14,000 each year and $100,000 total in an ABLE account without losing benefits. The money can be used for things like special education and job training, assisted transportation and housing, or medical bills.
The state also has an endowment trust fund that allows disabled people to save without losing benefits. However, the trust is for people with developmental disabilities — disorders that slow mental and physical development and are diagnosed by age 18.
The ABLE program is open to people with any disability, said Luke Wickham, who advises the state’s Early Learning and Human Services Committee. For example, people who are blind or deaf would qualify for ABLE but not the trust fund.
“They’re two different ways to save money, but they’re both wonderful for people with disabilities,” said Sue Elliott, executive director of Arc of Washington, an organization that works with developmentally disabled people.
A national committee is set to work out details of the U.S. ABLE Program this summer, she said. A state work group is being formed to design Washington’s version by Nov. 1. Once details are ironed out, the Legislature will consider a bill next session to finalize the program.
“We’re hoping that within a year from now, families or adults with disabilities will be able to open an account,” Patterson said. “These days, obstacles generally come in the form of money. Money will be needed to start the program and get staff in place, and budget has been contentious in Washington.”
The state Office of Financial Management estimated it would cost more than $1 million in the 2015-17 biennium to fully implement the ABLE program. The cost of a work group is about $125,000, and a more detailed look at funding is on the group’s to-do list.
Emma is excited to talk to legislators again, she said. She’s not nervous. Her mom is, but she’s not. That makes Emma laugh and her mom smile.
“The hardest part of having a disability in our society isn’t the disability, it’s the society,” Patterson said. “I always thought it was my job to be her voice until she can speak for herself, and now it’s so exciting to see her speak.”
Emma told legislators she has to work hard but can do anything she sets her mind to. That’s not the most important thing she had to say, though.
“I want to go to college,” Emma said firmly, looking up from her polka-dot painted fingernails during an interview Tuesday.
“Is that the most important thing you told them?” her mother asked.
“Yeah. I want to go to college.”
Kari Bray: 425-339-3439; firstname.lastname@example.org.