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UDaily National developmental disabilities leaders attend UD institute

July 29th, 2009

Leaders in the developmental disabilities field met at the University of Delaware this summer to help assure the quality and commitment of the next generation of leaders for organizations serving people with developmental disabilities.

The National Leadership Consortium on Developmental Disabilities (NLCDD) at the Center for Disabilities Studies (CDS) at the University of Delaware held the Summer 2009 Leadership Institute, a conference featuring some of the biggest names in the field of developmental disability supports, from July 12-17.

The NLCDD is co-directed by Steven M. Eidelman, H. Rodney Sharp Professor of Human Services Policy and Leadership at the University of Delaware, and Nancy Weiss, a researcher at the Center for Disabilities Studies.

The 29 participants, who came from across the United States and as far as Italy and Canada, spent the week participating in group discussions, exercises and lectures in order to develop and enhance their leadership skills.

Eidelman came to UD in the fall of 2005 with the goal of focusing on developing the next generation of leaders for this quickly changing field. With that goal in mind, he developed the first National Leadership Institute, which took place in July 2006, and there have been two to three conferences held every year since then.

The leadership institute was partly created because there are concerns that many leaders of disability organizations are reaching retirement age and there is not a “next generation” of leaders prepared to move into these roles.

“We wanted to bring national and emerging leaders together and see what was possible,” Eidelman said. “So far, feedback has been very positive, and the institutes will be spreading throughout the country, led by UD.”

Goals of the leadership institutes include that participants learn about how to bring about the shift to individualized and responsive supports, rather than inflexible and congregate services, and that they commit to self-direction and the need for people with disabilities and their families to function as full participants and leaders in service delivery and system reform. Ideally, the participants will use the knowledge they have gained to become more effective leaders and use the connections they have gained to network around topics of system reform and the provision of quality supports.

“People come away with an understanding of their own leadership styles, their strengths and the areas on which they need to focus,” Weiss said. “They leave with a much fuller understanding of the ways in which the field is shifting — including changes in the ways supports are offered, demographic changes, changes in funding and changes in service models.”

Weiss said the conferences have many advantages for individuals who want to make a bigger impact in the field.

“People are able to form a community and a network to help move their understandings and the field forward,” she said. “They can use the network of the 250 past graduates of the Leadership Institute to seek information, discuss ethical issues and to request resources.”

Tim Quinn, from The Arc Northern Chesapeake Region in Maryland, is a regular faculty member of the NLCDD leadership institutes and says he keeps coming back because the message of the institute is so valuable. At this summer's institute, he spoke about the transformation from traditional group home and sheltered workshop services to individual support services.

“We hear pretty unanimously that participants are terribly moved and get a positive impact out of these conferences. For some, it is even career-changing,” he said. “Many participants are state government officials and others who have impact on policy. The passion and energy they get from the leadership institutes go back to their organizations and they have an incredibly positive influence.”

The National Leadership Consortium on Developmental Disabilities is a partnership of nine major national developmental disability organizations. The goal of the consortium is to offer the necessary training for emerging leaders in the developmental field to embrace the values and build the skills necessary to work in government and nonprofit organizations that support people with developmental disabilities and their families.

Article by Jon Bleiweis
Photos by Ambre Alexander

Disability Rights Activists Nationwide Confront Democrats On Institutional Bias

July 21st, 2009

For Immediate release: July 21, 2009

For information contact:
Bruce Darling 585-370-6690
Marsha Katz 406-544-9504

Washington, D.C.—Demanding an end to the institutional bias in the nation’s health care policy, ADAPT, the nation’s largest cross-disability, grassroots disability rights organization, took their fight to the headquarters of the Democratic National Committee (DNC) in Washington, DC, with 24 simultaneous protests at Democratic offices across the country, and at Senator Max Baucus’ office in Missoula, MT.

ADAPT is calling for Congress to eliminate the Medicaid institutional bias in 2009 – either in health care reform or as separate legislation, specifically the Community Choice Act (CCA). CCA (S683/HR1670) allows people to choose to stay at home to receive long-term services and supports instead of being forced into nursing homes and institutions because that’s what the law will currently pay for.

The protesters are additionally demanding that the Democrats apologize for the loss of freedom suffered by countless Americans that resulted when a Democratically-controlled Congress created the institutional bias over 40 years ago; and that the DNC facilitate an immediate meeting between ADAPT and Senator Max Baucus, Chair of the Senate Finance Committee; Representative Henry Waxman, Chair of the House Committee on Energy and Commerce; and Valerie Jarrett, Senior Advisor and Assistant to the President for Intergovernmental Affairs and Public Liaison, to develop a plan to pass the Community Choice Act and eliminate the institutional bias in 2009.

“For 44 years, Medicaid’s institutional bias has stolen the lives of Americans with disabilities and older Americans,” said Mike Oxford, ADAPT organizer from Topeka, KS. It has deprived them of their most basic freedoms. The Democrats were in power when that bias was legislated. Now it’s time for them to apologize, and most importantly, it’s time for them to take action and fix it.”

ADAPT’s action nationwide comes in part as a response to a video released last week by the Democratic National Committee. The video tells Americans “It’s time” for health care reform, and urges them to call their Senators. Picking up on that theme, ADAPT released its own video this week telling the Democrats “It’s time” to eliminate the institutional bias and pass the Community Choice Act. See www.adapt.org/takeaction.

“The Democrats say they want health care reform to focus on covering more people and saving money,” said Cassie James, ADAPT organizer from Philadelphia, “yet they refuse to change the current law that mandates people receive long term care in the most expensive setting rather than less expensively at home where they would rather be. In addition, the current law forces states to go through complicated procedures just to let a few people stay at home and get assistance there.”

Many states have no home and community-based services, or they may provide limited services with waiting lists that keep people stuck for years in institutions and nursing facilities before they have any chance of getting services. It is not uncommon for people to wait so long that they die before their name reaches the top of the waiting list.

In an unprecedented show of unity this year, disability and aging groups across the country have demanded that healthcare reform be the vehicle to change federal policy which favors paying for institutions over community based services. They have repeatedly asked Congress and the President to pass the Community Choice Act, but currently, NO proposal in the health care reform package eliminates the institutional bias in Medicaid.

“The Democrats have historically supported the Community Choice Act every time it has been introduced in Congress,” said Dawn Russell, an ADAPT organizer from Denver, CO. “Many in the disability community were optimistic that the Democrats would finally pass CCA and eliminate the institutional bias, but the Democratic leadership in Washington is doing absolutely nothing. It seems as though the Democrats are so concerned with political maneuvering that they have completely forgotten about the people they represent who have no voice in Washington.”

“ADAPT is concerned about people who right now are stuck in nursing facilities and other institutions. We are concerned about people on Medicaid who will continue to be forced into those places if the law isn’t changed. And if the Democratic leadership won’t speak up for them, then I will,” added Russell