Disability Leadership Insider, Dr. Robert Pasternack, Spotlighted On Blog Talk Radio
January 28, 2016
ACCELIFY’S DR. ROBERT PASTERNACK DISCUSSES DISABILITY, POLICY, AND THE CHALLENGES FAMILIES OF INDIVIDUALS WITH DISABILITIES FACE
Accelify’s Chief Education Officer and former U.S Assistant Secretary for the Office of Special Education and Rehabilitative Services, the Honorable Dr. Robert Pasternack appeared on the Mary & Melissa show on Blog Talk Radio last week alongside Mark Friese, Special Needs Financial Advisor for Merrill Lynch, to discuss disability policy, special education, and the challenges families face in securing services for their children.
Dr. Pasternack began by discussing his own personal and professional experience advocating for individuals with disabilities. The cause is close to home. Having been the primary caregiver for an adult brother with down syndrome and now the stepfather to his adult stepson with down syndrome, Dr. Pasternack discussed how his personal connection to disability has lead to deep empathy for families of individuals with disabilities and the challenges they face in advocating for their loved ones.
“One of the greatest challenges families face is the transition from high school to adulthood,” says Dr. Pasternack. “There’s never enough funding for adults with disabilities” he continued, “you move from the world of entitlement to the world of eligibility and it’s a very different system and families really have challenges in terms of trying to navigate the new system of vocational rehabilitation from the world of IDEA.”
Once a child has aged out of the school system, finding community-based supports that will promote independence, like housing options and supported employment can be extremely challenging.
From a policy perspective, one way to bring money for services back into the community is advocating for states to shut down institutions for people with developmental disabilities. Dr. Pasternack recounted how, during his tenure working as the chair of the government of New Mexico’s Developmental Disabilities Planning Council, he was able to facilitate the closure of 3 of the state’s institutions for people with developmental disabilities, which he described as one of the proudest accomplishments of his career: “Money actually followed the individuals with disabilities to the community so we could create a more inclusive approach to integrating these individuals in the community with the kind of services and supports they need in order to live the American Dream” he explained.
One of the main challenges that families face as their children move from the entitlement system of IDEA to the eligibility system of adult services is performing the balancing act of promoting independence while maintaining Medicaid eligibility. In order to be eligible for Medicaid, an individual with disabilities cannot have more than $2,000 of assets in their name. This provides a disincentive for these individuals to save any kind of money and even to seek employment, as it could disqualify them from receiving Medicaid benefits, which in many cases is their only means of coverage for health services.
The Achieving a Better Life Experience Act (ABLE) passed at the end of 2014 permits certain individuals with disabilities to open tax-free savings accounts, to which they can contribute as much as $14,000 a year that can then be used on things like medical expenses, education, and community-based supports without disqualifying them from Medicaid and Social Security. And while the legislation passed more than a year ago, it is expected that most states will not have programs running until 2017.
According to Dr. Pasternack, it should be a top priority of lawmakers to ensure that we “have systems in place that respect individuals with disabilities, that give them choices, that give them options, that get them involved in taking control over their own lives, whether it’s in educational decisions, whether it’s employment decisions, whether its post-employment decisions whether it’s post-secondary programs. The ABLE act is just another step in that direction of person-centered planning and setting high expectations that give people the opportunity to live the American Dream.”
While individuals with disabilities wait for the ABLE Act to take effect, they continue to face challenges. Even individuals who do qualify for assistance have trouble accessing Medicaid waivers, which provide special funds that go toward community-based supports for independent living, with wait times sometimes lasting years. In states like Minnesota, where the median wait time for a Medicaid waiver was 5 ½ years, state officials have recently pressured counties to begin spending millions of dollars that have been set aside on community-based services for individuals with disabilities, thus drastically reducing waiting lists and empowering thousands of individuals with disabilities to live independently. But there are also states like Kansas, where plans for Medicaid expansion are in the works, but do nothing to address long wait lists of individuals with disabilities who are waiting for support services to help them live independently.
In the meantime, Mark Friese, who does financial planning for families of individuals with disabilities, states that it is crucial that families do everything they can to get their children on Medicaid waiver waiting lists as early as they can.
You can listen to the entire conversation with Dr. Pasternack, in which he discusses IDEA and the state of special education funding here.