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RespectAbility Testimony to the National Quality Forum’s HCBS Quality Committee

Wednesday, April 29th, 2015

Honorable Committee,

Thank you for your leadership in understanding the challenges of meeting the needs of individuals with disabilities served by home and community-based services (HCBS). RespectAbility is a nonprofit working to enable people with disabilities to achieve the American dream, just like anyone else. There are 20 million working age Americans with disabilities, many of whom receive long term services and supports (LTSS).

As identified in 2013 by the Senate Commission on Long Term Care, forty-four percent of those who utilize LTSS are working age Americans between the ages of eighteen and sixty-five. In the District of Columbia itself, there are 40,200 working age people with disabilities between the ages of twenty and sixty-four. Among this population, only 33.9% are employed. It is important to look at not only working age people with disabilities, but also youth. There are 4,800 District residents with disabilities between the ages of sixteen and twenty. Of that number, each year at least 1,200 young people with disabilities transition out of the educational system and into what should be the workforce. Yet this group faces a number of differences and many barriers in their efforts to live in the community.

Living in the community, by itself, is not enough to meet the needs people have in terms of function, services, quality of life, and health. The nexus of these issues is the need for work. The opportunity to be employed enables many to be independent, and to be healthy. Competitive integrated employment offers dignity, respect, friendship, purpose and income. This is especially important as the population ages and the demands on LTSS grow. As the NQF committee works to conceptualize and understand the gaps in HCBS, RespectAbility invites your attention to understanding how to overcome barriers to employment among those served by LTSS.

From research we know that 70% of working age Americans with disabilities want to work. This desire is often frustrated by the requirements attached to services as well as difficulties in accessing transportation, housing, and education. Likewise, the cost to access supports is a huge barrier that prevents people from acting on their desire to work and become a successful employee.

Together with Best Buddies, the National Association of Councils on Development Disabilities (NACDD), the National Council on Independent Living (NCIL), the National Organization on Disability (NOD), and Paralyzed Veterans of America (PVA), RespectAbility has created a resource called the Disability Employment First Planning Tool. This document describes many evidence based best practices and details effective models. This toolkit and other documents catalog practices that are relevant to your committee’s work. We invite your committee to look at this resource to identify successful best practices and replicable models.

While there are huge needs among those who rely on LTSS, there are models that have been proven, cost-effective, and replicable. There is solid evidence that practices exist which can serve those with physical, intellectual, or cognitive disabilities and especially those who are younger. There is evidence for best practices that can help up to 70% of young people with disabilities to enter the workforce. There are proven programs such as Project SEARCH, Bridges to Work, and PROMISE which deserve your attention.

Our organization is focused on jobs for people with disabilities for a simple reason. Helping people to become independent, to be healthy, and to have a quality life depends on enabling then to pursue their dreams through the fulfillment of work. Study after study points to the intersectionality of poverty, ill-health, and disability. While there are many challenges to overcome and needs to be supported, enabling people to pursue employment can address the core gaps being studied by your committee.

Beyond barriers, employment, and models, there is another critical area that your committee should direct its attention. That is the impact that technology can have among working-age adults with disabilities who are using LTSS. Assistive technology, mobility devices, and other supports can enable many individuals to look beyond receiving services and instead into pursuing their dreams. Technology is also a rapidly evolving element in the environment in which services are delivered and people with functional limitations live their lives. As such, the use of technology to mitigate limitations or the role of assistive technology in facilitating communications can be topics for your committee to investigate.

Finally, because of your committee’s explicit commitment to quality, measurement, and synthesis, it is important that you consider the right data in understanding working age adults with disabilities and HCBS. As such, included with this testimony is a copy of the data we have organized about disability and employment in DC. To see where the gaps are and where research might further our knowledge, it is vital to get a picture of the situation on the ground throughout the country. The data and metrics that we present are available for all fifty states.

Thank you again for your leadership and your efforts for people with disabilities. If you have any questions, please do not hesitate to contact me.

Jennifer Laszlo Mizrahi, President, RespectAbility

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