ABLE Act of 2013: Update


By: Aaron Carter Batesportrait of Aaron Bates

On Friday, September 19th, Federal lawmakers announced that a deal was reached to permit The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) to move forward in Congress. The ABLE Act was introduced in 2013 and, with a model based on IRC 529 college savings plans, aims to amend Section 529 of the Internal Revenue Code to allow for creation of tax-free savings accounts for individuals with disabilities.

The ABLE Act is critical to further enabling independent, community-based living while eschewing institutionalized care. Typically, the amount of resources one may have access to on a monthly basis cannot exceed $1,100-$2,000 for individuals and $2,000-$3,000 for couples (Please check your State’s specific guidelines. Medicaid income limits also vary by state.  The range for individuals is typically $600-$800 and $1,000-$1,350 for couples.   Some states use a formula based on the individual’s federal SSI benefit level.  In these instances, the eligibility limits are usually three times the SSI benefit.).  Anything exceeding these thresholds, disqualifies an individual with a disability from benefits.

The ABLE Act is designed to lessen the impact of the financial burdens and thresholds associated with being disabled by permitting individuals with disabilities to have tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurance, Medicaid, SSI, employment, and/or other sources. The Act also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the individual passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program, such as Medicaid or SSI.

On Friday, the Act’s chief sponsors and leaders of the Senate’s Committee on Finance said in a joint statement that they expect the legislation to be considered when Congress returns to Washington in November. “We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the president’s desk in the lame duck session,” read the statement from Sen. Ron Wyden, D-Ore., Sen. Orrin Hatch, R-Utah, Sen. Bob Casey, D-Pa., and Sen. Richard Burr, R-N.C.

The ABLE Act has been under consideration in Congress since 2006 and is sponsored by more than half the members of both the U.S. House of Representatives and the Senate. The bill passed a House committee in July, but lawmakers indicated they would need to reach an agreement on how to pay for the measure before it would be put up for a floor vote. The deal reached last week will “serve as the foundation for final passage,” the senators said.


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2014 Disability Policy Seminar


On April 7-9, 2014, I had the privilege to attend the 2014 Disability Policy Seminar in Washington, D.C. and participate in advocacy efforts to make an impact on disability policy. The Disability Policy Seminar is an event that brings together advocates for individuals with disabilities with public policy experts and focuses on major federal issues and pending legislation that affect the lives of persons with disabilities and their families. The seminar provided me the opportunity to network with other advocates from around the country and share experiences about barriers that people with disabilities are facing throughout the country, as well as collaborate on ideas for solutions. Through the in-depth sessions, I learned about the federal policies, provisions, and pending legislation important to people with disabilities, including proposals related to Medicaid, Medicare, Social Security and SSI that may have effects on federal disability funding, housing, community living, education and employment, and services for individuals with disabilities. (click here to read more)    


Institutionalization of Medically Complex Children


A.R. v. Dudek – the efforts to give children with disabilities the care they need.

Florida has been home for approximately three thousand children with severe disabilities who require constant nursing care or supervision on a 24-hour per day basis to stay alive. These disabilities could be the result of a trauma, such as a shaken baby syndrome, near drowning, or an auto accident, or could be a condition with which the child was born. Many of these children have tracheotomies, gastrostomy tubes, or ventilators, and as a result of their conditions, most of these children have degrees of developmental or intellectual disabilities.

At least since 2010, it has been the policy of the State of Florida to rely on the parents and caregivers, including siblings, of these children to provide such life-sustaining nursing care to these children, despite the requirement of Medicaid to pay for as much nursing care as is medically necessary. These parents or caregivers are not medical professionals, yet they are entrusted with life sustaining care of their children. These parents are pushed into the position of placing their child in a nursing facility to obtain the medically-necessary services they could not receive in their own homes. As a result, the State of Florida pushed many of these children into institutionalized settings, such as residential geriatric nursing homes or 12-hour pediatric prescribed extended care centers. Due to their efforts, Florida saved over $ 25 million dollars by denying claims for nursing services for our most fragile children in 2011 to 2012 alone. For those children in foster care, nursing homes is the only option because of the lack of medical foster homes.

Disability Independence Group, Inc., the North Florida Center for Equal Justice, Inc. and the FSU College of Law Public Interest Law Center are representing these children to ensure that these families receive services in the most integrated setting with appropriate and necessary supports and services to allow these kids with disabilities to live at home. In the landmark United States Supreme Court case of

Olmstead v. L.C. ex rel. Zimring, the Court recognized that the unjustified isolation of individuals with disabilities is discrimination under the Americans with Disabilities Act. In so concluding, the Olmstead Court found that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” Children should be with a loving family and are worthy and capable of participating in community life. Unlike one’s own family, medical foster home, or even a group home, such restrictive, medically-based nursing facilities lack required integration with other persons, children, and the community.

This action seeks class-wide injunctive relief and requires the states and their agents to (1) provide all children with disabilities the opportunity to receive services in the most integrated settings; (2) make reasonable modifications to the Defendants’ community service system to accommodate the needs of qualified children the opportunity to live in more integrated settings; (3) implement a professionally-adequate screening and assessment process of children in nursing facilities that will accurately identify children with developmental disabilities, including whether they can be appropriately served in the most integrated settings; and (4) for those children who are medically fragile or medically complex, to ensure that they receive adequate nursing care based upon their medical needs and not based on their parents or caretakers schedule, in the most integrated setting.

Every month, our website will update this matter and provide a description of a few of these children and the families that love their kids and care for them. Each of the families have fought for the care that they have and continuously fight for the lives of their kids.

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