I'd like to thank Katherine (Katy) Beh Neas, senior vice president for government relations at Easter Seals, for taking the time to talk with me about critical disability issues as we approach the 2012 presidential election. Katy has been focused on these issues since the late 1980s, when she worked in the Senate on legislation including the Americans with Disabilities Act and the Individuals with Disabilities Education Act. In her current role, she monitors and analyzes federal legislation and regulations affecting children with disabilities and their families, particularly in the areas of autism, early intervention, early childhood education, special education and budget and appropriations.
We discussed the record of the Obama Administration, health care reform, special education, and key differences between the candidates' positions.
Q: When you consider the issues that are important to people with disabilities, how would you assess the commitment and the actions of the Obama Administration? What has been done well, and what requires more attention?
A: First, what's been done well: Easter Seals launched a major initiative in 2011 – Make the First Five Count – to reduce the number of young children who enter kindergarten with a disability or developmental delay that hasn’t been identified or addressed. Our research shows that approximately 1 million kids fall into this category. An element of the MFFC campaign is advocacy to increase funding for the federal early intervention program, Part C of the Individuals with Disabilities Education Act. President Obama’s budgets have called for increases in Part C over the past two years. We are very pleased with his leadership in this area. In addition, the President has championed health care for people with disabilities in the Affordable Care Act, Medicaid and Medicare.
What needs more attention? Easter Seals was disappointed that the Administration is not working on implementation of the CLASS Act – the Community Living Assistance Services and Supports Act – this policy was adopted as part of the Affordable Care Act and would establish a voluntary long-term care assistance policy.
Q: The Easter Seals strongly supported the Supreme Court's decision to uphold the major portions of the Affordable Care Act. How could the ACA be strengthened to meet the needs of people with disabilities. What are the biggest benefits?
A: While there are many benefits within the ACA, some of the insurance market reforms are truly transformational. The elimination of pre-existing condition exclusions for kids and extending coverage to dependent children are huge first steps. Families with kids with disabilities no longer have to worry about whether their child will be dropped from coverage because of a chronic condition or disability.
We are also working to shape how the rehabilitation and habilitation benefits are designed so that people with disabilities of all ages can get the appropriate habilitation services that can help a child gain a skill he or she never had or help an adult slow down the regression of a disability.
The bulk of the ACA comes online in 2014. Our hope is that the law stands and that states will continue to work to meet this important deadline.
Q: Governor Romney has vowed to repeal the ACA on his first day in office, if he's elected. Would that have any immediate impact on families living with disabilities?
A: Prior to the enactment of the ACA, most people with disabilities were unable to buy health insurance on their own. Pre-existing condition exclusions made it virtually impossible for children or adults with disabilities to get coverage outside of an employer provided plan or outside of a government program like Medicaid. For many, Medicaid eligibility requires the individual to have an extremely low income. The ACA changed all of that, and today, no child with a disability can be dropped from coverage because of a pre-existing condition. For this reason alone, Easter Seals opposes repeal of the ACA.
Q: You've helped lead the Consortium for Citizens with Disabilities since its founding. Has health care reform been a contentious issue among the 50 organizations that are part of that consortium? What principles do they agree on, and where has there been debate?
A: I’ve been a member of the Consortium for Citizens with Disabilities for 21 years, and chair its Education Task Force. My colleagues at Easter Seals have been very involved in the CCD Health, Long Term Services Supports, Employment and Training and other Task Forces. This coalition has a solid track record of working across disparate groups to find areas of agreement. I believe that there was very strong support for health reform among the majority of groups. I have attached a copy of the CCD principles on health reform as well as Easter Seals’ principles.
Q: In all the talk about health care reform and Medicaid, the topic of education seems to be a much lower priority. Yet for students with disabilities, services funded by the Individuals with Disabilities Act are a daily need. What do you think of the Romney-Ryan proposal to privatize special education funding?
A: Funding for special education services is always a hot topic. The Individuals with Disabilities Education Act (IDEA) is a civil rights law that requires states to provide a free, appropriate public education to each child with a disability regardless of the nature or severity of the disability. Congress also provides billions of dollars each year to states to help them meet their obligation. The law currently provides the rights to a child to have his or her special education needs met at no cost to his or her family.
Easter Seals believes that funding for quality early education and care services is the best way to decrease special education funding. We know that when kids get their special needs addressed before they enter kindergarten, they need less special education services. Our goal should be to focus on what works – to ensure that every child has a chance to succeed and with that success comes a more productive and independent life.
Q: For my readers who are studying the records and platforms of the presidential candidates, what would you say are the biggest differences between the candidates' philosophies and policies as they affect disability issues?
A: The treatment of Medicaid is among the biggest difference between President Obama and Governor Romney. President Obama is working to protect access to appropriate services to children with disabilities and long term services to adults with disabilities that are currently available under the Medicaid program. Governor Romney’s platform proposes to alter the Medicaid program from one that guarantees specific services to one that is a block grant to states that eliminates any guarantees.
Q: Is there any other information you think families should have as they prepare to vote this year?
A: This election is really important. Elected officials at all levels of government will make decisions that affect the lives of children and adults with disabilities and their families. I would urge all of your readers to educate themselves about the positions of the candidates and then vote. Elected officials need to know how their priorities either support or hinder the quality of life of children and adults with disabilities. It’s up to all of us to educate them.
If you want to learn more about these issues, Katy recommends "Principles for Health Care Reform from a Disability Perspective," prepared for the Consortium for Citizens with Disabilities, and the Easter Seals' principles for health care reform.
Visit the Easter Seals website, learn about the Make the First Five Count initiative, or read Katy's bio.
Advocating for children and adults with disabilities, this blog began during the 2008 presidential campaign to track the candidates' positions and records. Citizen advocacy for people with disabilities and their families is critical, and not just during election seasons. Don't let your elected officials play politics with your children and loved ones. They deserve better.
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