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Plan Creates Tax-Advantaged Savings Accounts, Like Those for College, To Help Parents Better Afford Medical Care, Education, Transportation & Other Services For Children With Developmental & Physical Disabilities – Currently, If an Individual’s Taxable Income & Savings Exceed a Certain Level, They’re Disqualified for Key Disability Services

In Erie County, There Are More Than 30,000 Recipients of Supplemental Security Income Benefits and More Than 3,300 of Cases of Autism in School Age Children; Throughout New York State, There Are 25,000 Individuals with Down Syndrome Alone

Schumer: WNY Families of Children with Special Needs Should Have Help Affording Care & Saving for the Future

Today, at People Inc. in Williamsville, U.S. Senator Charles E. Schumer called for passage of bipartisan legislation that would help thousands of Western New York families create tax-advantaged savings accounts for family members who have long-term disabilities, like Down Syndrome, Autism and Fragile-X. These accounts would help these individuals better afford the cost of care and save for the future. The Achieving a Better Life Experience Act (ABLE) would allow families to set up special, tax-free accounts, similar to 529 education savings accounts, to save money to cover critical education, medical care, support services, employment training, housing, and transportation services for individuals with disabilities. Families who are currently the recipients of supplemental security income (SSI) benefits would be eligible to set up these accounts under the legislation that Schumer supports. Currently, without this legislation, a disabled person and their family would be disqualified from key government disability aid if their taxable income and savings exceed a certain level.


To highlight the extreme financial struggles that families with disabilities face, and the need for these savings accounts, Schumer noted that according to a 2006 Harvard study, it can cost about $3.2 million to care for an autistic person over the course of their lifetime. A recent Centers for Disease Control and Prevention (CDC) study showed that an estimated 1 out of every 68 children in the United States has been identified as having Autism Spectrum Disorder. In addition, an estimated 25,000 people in New York State have Down Syndrome and 80,000 people in New York State have Fragile-X. According to the most recent data, there are more than 43,000 Western New York recipients of SSI benefits and 4,730 cases of Autism in school age children. In Erie County alone, there are over 30,000 residents who are recipients of SSI benefits and 3,316 cases of Autism in school age children.

“Caring for some of our most vulnerable disabled children, and managing the huge financial cost that comes along with that care, must be a top priority for everyone, not just their families. Over 43,000 Western New Yorkers have disabilities that can limit their ability to earn a living, and their families should not have to choose between paying for their day-to-day expenses of education, healthcare, transportation, therapies and more, and saving for their future,” said Schumer. “That is why creating these tax-advantaged savings accounts, similar to IRAs, will allow parents to put away more money for their disabled child, without losing key government disability services and benefits that they need at the present. Unfortunately, cases of Autism and other disabilities are on the rise and passing this bipartisan legislation is more important than ever; I’m strongly urging my colleagues to get on board with this plan and pass this bill.” 

Schumer was joined by Jim Boles, President and CEO of People Inc.; Rhonda Frederick, COO of People Inc. and President of the Developmental Disabilities Alliance of WNY; Mike Gross, Executive Director of Heritage Centers; Max Donatelli, co-president of DDAWNY Family Committee. Members of the YALT (Young Adult Life Transitions) program, and advocates and families from the Developmental Disabilities Alliance of WNY

“Time and time again Senator Schumer advocates for people that face the kind of challenges most of us do,” said Rhonda Frederick, COO of People Inc. and President of the Developmental Disabilities Alliance of Western New York. “What distinguishes him from most is his ability to recognize the needs of people that are vulnerable like seniors and individuals with special needs and their families. A perfect example is his leadership for passage of the ABLE Act which will help thousands of families and their loved ones with special needs have more financial security. On the behalf of these families, we thank you.”

“Senator Charles Schumer has the exceptional ability to represent all people – those of means and those in need,” said Michael L. Gross, Executive Director of the Heritage Centers. “With this piece of legislation entitled ABLE Act, Senator Schumer shows his compassion toward those families whose lives and means revolve around children with special needs and the care that will be needed to keep them safe and healthy. He is keenly aware of the extra measures of anxiety and stress our families face when planning for the long term needs of children who will require lifelong services. We sincerely thank Senator Schumer for his continual attention and dedication to serving NYS' most vulnerable population.” 

Under the ABLE Act originally introduced by Senator Bob Casey (D-PA), parents of children with a disability would be allowed to set up tax-advantaged savings accounts for their children in order to finance their long-term care. Money could be saved to cover education, medical and dental care, community support services, employment training and support, moving and assistive technology, housing and transportation. Many individuals with disabilities and their families have assets that put them above the qualifying cap for Medicaid, but insufficient to cover the costly burden of care. As a result, they are effectively forced to sell assets in order to qualify for Medicaid, which pushes the family towards poverty while unnecessarily swelling Medicaid rolls, putting a strain on the program. The qualifying expenses appear below:

·         Education — tuition, books, supplies and other services from preschool through postsecondary education

·         Transportation —includes mass transit; purchasing or modifying vehicles with special equipment; and moving expenses

·         Housing — purchasing a home, rent, mortgage payments, home improvements, repairs, taxes and utilities are all qualifying expenses

·         Employment support — expenses related to obtaining and maintaining employment, including job training, assistive technology and personal assistance supports

·         Health and wellness — qualifying costs include premiums for health insurance, mental health, medical, vision, respite care, nutritional support, adaptive equipment and a host of other services

·         Assistive technology and personal care attendant support expenses

·         Other approved expenses and miscellaneous expenses, including financial management and administrative services, legal fees and any other expenses approved by the Secretary of the Treasury

The Schumer-backed legislation would allow individuals with disabilities or their beneficiaries to create a savings account similar to the 529 College Savings Account to save for long term care. Eligibility would be extended to individuals who qualify for supplemental security income benefits through Social Security. Individuals who have a medically-determined physical or mental illness that severely limits their ability to function and will last for more than one year are also eligible for a tax-advantaged savings account. Anyone could contribute into an individual’s account, and the principal would accrue tax-free throughout the lifetime of the individual who is disabled.  Because investments grow tax-deferred, these plans reduce the overall tax burden for individuals with disabilities and their families, making care significantly more affordable.

For example, in a traditional savings account, the amount of interest income accrued annually on deposits is considered taxable income and taxed at the account holder’s marginal tax rate.  However, under this proposal, the investment grows and can be removed from the accounts completely tax-free.  So, under the proposal, if a family deposits $10,000 into an account, assuming an average interest earned of approximately 3%, they will amass about $13,000 in the account after 10 years. In a traditional savings account, this would be taxed, but it would not be taxed under the ABLE Act. Additionally, when a withdrawal is made to cover a qualifying expense, all distributions are excludable from the gross income of the beneficiary.

Schumer noted a few examples of populations that would benefit from this legislation – those with Autism Spectrum Disorder, Fragile-X and Down Syndrome, among others. In 2012, which is the year with the most recent data available, there were 43,926 Western New York recipients of SSI benefits and 4,730 cases of Autism in school age children. There were 3,316 cases of autism in school age children in Erie County alone. In Western New York, there are an estimated 174,555 people living with a disability. Of that total, an estimated 14,667 are children. In New York State, there are about 80,000 people with Fragile-X Syndrome, which is a genetic condition that causes developmental problems including learning disabilities and cognitive impairment. In addition, an estimated 25,000 people in New York State have Down Syndrome.

While the bill offers cost savings for a large number of individuals with disabilities, Schumer highlighted the expenses of caring for an individual with autism in his push for the ABLE Act.  According to the CDC, it is estimated that total societal costs of caring for children with ASD were over $9 billion in 2011. Autism makes it difficult for individuals to communicate and interact with other members of society, which increases the need for special schooling, tutoring, and assistance when it comes to finding employment.

Families of children with developmental disabilities face enormous economic costs due to care expenses. According to the Center for Disease Control and Prevention, it is estimated to cost at least $17,000 more per year to care for a child with autism compared to a child without autism. On average, medical expenditures for children and adolescents with ASD were 4.1 to 6.2 times greater than for those without ASD. The medical costs for a child with Down Syndrome were 12 to 13 times higher than a child without Down Syndrome, as reported by the National Down Syndrome Society.