30 Years of Advocacy: And Miles to Go Before We Sleep

2012 Conference LogoJune 11-14, 2012

Grand Hyatt, Washington, D.C.

2012 Annual Conference: An Introduction

The 2012 Annual Conference on Independent Living was a great success! Over 600 advocates convened in Washington, D.C. for one of the most spirited and passionate conferences ever. A feeling of fellowship and unity was palpable in the air. In 2012, every last advocate brought their A-Game.

The March to the Capitol was loud and well attended. Our demands for access and equality reverberated from D.C.’s monumental architecture. Advocates shouted “Bring it on!” as the downpour began at the Rally on Capitol Hill.

Speakers and workshop presenters shared personal stories from the past 30 years and led attendees in collective contemplation of the future of our Movement and the miles to go before we sleep. We cheered on our brethren from every part of the nation as they were presented with awards for outstanding commitment to Independent Living in their communities.

The NCIL staff and Board were extremely moved as Centers big and small stepped before the crowd to commit whatever amount they could afford to ensure that NCIL will be a powerful catalyst for change for another 30 years.

We stand in admiration of what you, the NCIL membership, have been able to accomplish through the Annual Conference on Independent Living year after year. Mark your calendars now for July 24-27; we can’t wait to see what you’ve got in store for 2013!


We are working diligently to post the thousands of photos from this year’s conference. One thousand photos by Tom Olin are now available through Google Images. We will notify the membership as soon as the rest are available. We apologize that we do not have the capacity or knowledge to caption every picture. If you see a picture of yourself or others you know, please caption it for the benefit of all. Thank you!


If you attended this year’s Annual Conference, please help us by evaluating your experience. If you completed a paper evaluation on site, your responses have already been recorded and there is no need to use this online form. NCIL will use your feedback to continually improve as we plan for the coming years. Thank you!

Legislative and Advocacy Update

The 30th Anniversary Conference Experience

By Austin Walker, NCIL Senior Policy Analyst

This year was my fourth NCIL Conference, the third as a Policy Analyst for NCIL. I have never been surprised by the feistiness of our advocates… except the first year I attended. I was sent to my first Conference as an employee of Paraquad, an excellent Center for Independent Living in St. Louis, Missouri. I had no idea what to expect when I arrived in Washington at the Conference that July, but I definitely did not expect to find so many passionate advocates ready to fight.

The advocates at the 30th Conference did not surprise me this year; I have come to expect a certain quality of advocacy and strength of character in NCIL members. However I was very impressed with the amount of attention given to our next generation of advocates, and ensuring they are prepared to understand the responsibility and challenge placed upon their shoulders as torchbearers of the Independent Living Movement. I was genuinely excited to see that NCIL leadership is embracing the idea of readying and rallying younger members to assume meaningful positions to advance our Movement.

The 30th Conference appeared to be a turning point in NCIL’s history. We took a long look back on the monumental achievements made over the past three decades, but also looked forward to the next thirty years. This is the year that our members seemed to coalesce around the notion of reinvestment in our organization, primarily to ensure that it remains an effect force for civil rights in America for generations to come.

In 1982 NCIL was born, and so was I. We share a thirtieth birthday this year, and I have not been able to help reflecting on how much work has been done over this time to better the lives of millions of Americans across the United States. In this time NCIL has been active, fighting, and winning wars that have been waged so that many of us could realize true independence. During the keynote address, NCIL’s President Dan Kessler perhaps said it best. He said, “I am so excited to be here today as your President, during the 30th year of NCIL advocates kicking ass and taking names.” This sums up the spirit of this organization, and I am also proud to serve NCIL in this historic year.

So it seems as though the task has been set, to seek new advocates to inspire, and give them the tools they will need to be effective fighters in the coming decades. There is much work to be done, and I was excited to be a part of the Conference that set the wheels of advocacy in motion yet again. This year’s NCIL Conference breathed new life into our members, our leaders, and our staff. I look forward to sharing in our renewed power, and the idea that we can make meaningful progress together.

NCIL March, Rally, and Hill Visits

Speakers at the 2012 Rally at Capitol Hill included: Senator Tom Harkin (D-IA), Senator Bernie Sanders (I-VT), AAPD President and CEO Mark Perriello, leading disability rights attorney and advocate Eve Hill, Paraquad co-founder and IL powerhouse Colleen Starkloff, Access Living President and CEO Marca Bristo, Statewide Independent Living Council of Kansas Executive Director Shannon Jones, Access Living Director of Advocacy Amber Smock, NCIL President Dan Kessler, and NCIL Executive Director Kelly Buckland.

Speeches focused on attacks on the ADA, reauthorization of the Rehabilitation Act and creation of an Independent Living Administration, ratification of the U.N. Convention on the Rights of Persons with Disabilities, involving youth directly in advocacy, and the historic nature of the annual NCIL March and Rally.

Afterwards, advocates headed to the Capitol for Hill visits, wet but undeterred. In the following days, those who met with their elected representatives (or their staff) submitted information on where members of Congress stand on the issues that matter most to the NCIL membership, as determined by NCIL’s bi-annual survey of the membership. NCIL is still compiling that data, and we will release a full report as soon as possible. Here’s what we know right now.

The data shows that we have a lot of support for the issues that are important to NCIL members, although it also reveals that we have quite a lot of work to do before our objectives can be achieved.

Will you support the passage of the Workforce Investment Act of 2012, with updated language in the Rehabilitation Act (Title IV of WIA) establishing an Independent Living Administration?


Yes: 26 (46%)
No: 2 (4%)
Undecided: 29 (51%)


Yes: 55 (42%)
No: 5 (4%)
Undecided: 72 (55%)

If the Workforce Investment Act of 2012 is not reauthorized, would you support reauthorizing the Rehabilitation Act (Title IV of WIA) separately?


Yes: 17 (37%)
No: 3 (7%)
Undecided: 26 (57%)


Yes: 51 (41%)
No: 2 (2%)
Undecided: 72 (58%)

Do you support a requirement that States provide home and community based services as an alternative to institutionalization and maintenance of the Medicaid funding stream that makes it possible?


Yes: 24 (48%)
No: 3 (6%)
Undecided: 23 (46%)


Yes: 57 (47%)
No: 4 (3%)
Undecided: 60 (50%)

Will you support the Inclusive Home Design Act of 2012 (H.R. 5781), which will require that federally funded single-family homes have minimum accessibility, just as federally funded multi-family housing does?


Yes: 11 (28%)
No: 1 (3%)
Undecided: 27 (69%)


Yes: 30 (28%)
No:  2 (2%)
Undecided: 77 (71%)

 Annual Meeting and Elections

NCIL’s 2012 Annual Council Meeting was held on June 13. The membership voted for the positions of Vice-President, Secretary, and Diversity Chair and three Member-at-Large positions. The Regional Representatives in the even-numbered regions were also up for election this year, but those elections took place before the conference. In addition to Governing Board elections, NCIL members considered two resolutions for possible adoption.

The elections for officers to the Governing Board were first on the agenda. Lou Ann Kibbee of SKIL Resource Center in Hays, Kansas was re-elected to serve as NCIL’s Vice-President for two more years. Pat Puckett, Executive Director of the GA SILC was re-elected to serve as NCIL’s Secretary for two more years. Stan Holbrook was re-elected to serve as NCIL’s Diversity Chairperson for two more years. Congratulations to Lou Ann, Pat, and Stan!

Regional Representatives are elected in shifts, according to the year; even-numbered regions elect their representatives in even-numbered years and odd-numbered regions elect their representatives in odd-numbered years. This year, the following individuals were elected by the members in their region to represent them on NCIL’s Governing Board:

  • Cliff Perez, Systems Advocate at the Independent Living Center of the Hudson Valley in Troy, NY was elected to represent Region 2 (New Jersey, New York, Puerto Rico, Virgin Islands).
  • Jason Wilson, a Board Member at Living Independence for Everyone (LIFE), a CIL in Savannah, GA was elected to represent Region 4 (Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee).
  • Brenda Stinebuck, Executive Director of Spa Area Independent Living Services in Hot Springs, AR, was re-elected to serve as the Region 6 representative (Arkansas, Louisiana, New Mexico, Oklahoma, Texas).
  • The members of Region 8 are still seeking a representative to the Governing Board. If you or anyone you know in Region 8 is interested, please contact the NCIL office today! Region 8 includes the states of Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming.
  • Roger Howard, Executive Director of LINC, Inc, a CIL in Boise, ID, was re-elected to continue his service as the representative of Region 10 (Alaska, Idaho, Oregon, Washington).

In addition, there were three Member-at-Large positions up for election at this year’s Annual Meeting. The following individuals were elected to serve as Members-at-Large on the Governing Board through the 2014 Annual Council Meeting:

  • Ann McDaniel, Executive Director of the West Virginia SILC;
  • Mark Derry, founder of Eastlake, Derry and Associates, an ADA consulting company in Morgantown, West Virginia;
  • Shannon Jones, Executive Director of the SILC of Kansas.

In the Regional Representative elections, Jason Wilson was elected to serve as the Governing Board representative from Region 4. As Jason was a current Member-at-Large on the Governing Board, a special election was held to fill Jason’s Member-at-Large position until 2013. Jeff Hughes, Executive Director of Progressive Independence in Norman, Oklahoma was elected to fill this position.

NCIL’s new Governing Board is as follows.

Executive Committee:

  • President, Daniel Kessler
  • Vice-President, Lou Ann Kibbee
  • Secretary, Pat Puckett
  • Treasurer, Phil Pangrazio
  • Diversity Chair, Stanley Holbrook
  • Regional Representative Chair, Maureen Ryan
  • Executive Director, Kelly Buckland

Regional Representatives:

  • Region 1 Representative, Mary Margaret Moore
  • Region 2 Representative, Cliff Perez
  • Region 3 Representative, Jan Derry
  • Region 4 Representative, Jason Wilson
  • Region 5 Representative, Maureen Ryan
  • Region 6 Representative, Brenda Stinebuck
  • Region 7 Representative, Michelle Krajewski
  • Region 8 Representative, Vacant
  • Region 9 Representative, Diane Rovai
  • Region 10 Representative, Roger Howard


  • Ann McDaniel
  • Bruce Darling
  • Mark Derry
  • Vicki Haws
  • Shannon Jones
  • Jason Wilson


After the elections, members considered two proposed resolutions. Both resolutions were adopted by the membership.

The Resolution on Abuse in Government Funded Facilities affirms that NCIL acknowledges that the abuse being endured by individuals who remain in institutions can no longer be tolerated and that the perception of “out of sight, out of mind” has led to a system that has failed generations of people with disabilities. The resolution further directs NCIL to encourage its membership to be the voice of those who are silenced by circumstances and speak out on their behalf; to express outrage when these cases come to light and to promote the humane treatment of people with disabilities living in institutions; and finally, that NCIL will advocate to ensure that every person who is institutionalized can have access to the individualized services and supports that are necessary for each individual to live in the most integrated setting appropriate to each individual’s choice and abilities; and that no individual wishing to leave the institution and live more independently will be subjected to intimidation or discouragement during this process of pursuing the promise of the ADA to live a life with dignity and respect in the community.”

The Resolution on the Exploitation of People with Disabilities affirms that NCIL acknowledges that the exploitation of persons with disabilities is a chronic problem that may increase during times of economic hardships making individuals receiving benefits prime targets. The resolution directs NCIL to encourage its membership to provide advocacy and skills training around benefits and finances to the individuals they serve.


The Awards Banquet is a very special event at the NCIL Conference every year. The banquet is our opportunity to come together as a community and thank advocates and allies that have fought tough battles during the past year to advance the rights and independence of people with disabilities. This year’s banquet was hosted again by Stan Holbrook, Chair of NCIL’s Diversity Committee and Executive Director of Three Rivers Center for Independent Living in Pittsburgh, PA.

Regional Awards

  • The members of Region 1 honored Dennis Heaphy of Massachusetts for his outstanding leadership in the fight for the inclusion of people with disabilities at all stages of the Massachusetts Demonstration to Integrate Care for Dual Eligible Individuals. Thank you, Dennis!
  • Region 2 members selected George Hoehmann and the staff of Rockland Independent Living Center for their advocacy in the fight to persuade Palisades Center Mall, the fourth largest indoor mall in America, to continue to offer motorized scooters for customers with disabilities – a service they had recently discontinued. Thanks to their advocacy, Palisades Center returned the scooters and another area mall added them! Way to go Rockland ILC!
  • NCIL members in Region 3 recognized Mark Derry of Morgantown, WV. Mark was recognized for his tireless work co-chairing NCIL’s ADA / Civil Rights Subcommittee and serving as a national ADA expert and watchdog on behalf of NCIL and all Americans with disabilities. Alright, Mark!
  • In Region 4, Dave Zilles, a member of the Georgia SILC was recognized for his efforts to reduce waiting lists and get Georgians with disabilities services now! Dave’s advocacy has resulted in services for an additional 83 people with physical disabilities or brain injury. Go Dave!
  • Region 5 recognized everyone at Access Living in Chicago for their efforts in the Colbert v. Quinn lawsuit on behalf of people with disabilities who receive Medicaid and who live in nursing homes in Cook County, Illinois. As a result of legal action, the court ordered person centered planning and increased consumer control. While many parties were involved in the case, Access Living’s role as a consumer driven disability organization was central to the success of the lawsuit. Thank you Access Living!
  • In Region 6, Harvey Spears of REACH in Dallas was honored for his efforts to learn about and advocate with people with environmental illnesses/multiple chemical sensitivities. He has advocated tirelessly and relentlessly on behalf of this group of REACH consumers. Congratulations, Harvey!
  • Region 7 advocates recognized the Kansas Association of Independent Living Centers (KACIL) for its organization and advocacy efforts to file over 630 Olmstead complaints with Health and Human Services (HHS) on behalf of the thousands waiting for home & community based services. Kansas advocates fought relentlessly to bring the waiting list and the Olmstead complaints to the attention of HHS, Department of Justice, Centers for Medicaid and Medicare, and other federal agencies. Way to go, KACIL!
  • Members of Region 8 chose to recognize Nancy Bentley of Active Re-Entry in Eastern Utah for her outstanding and visionary efforts that have resulted in Native Americans with disabilities living on the reservation to receive independent living services for the first time ever. The lives of people who have received a wheelchair, a ramp, and IL services have been forever changed as they have access to inclusion and participation in ways that were not possible prior to the efforts of Nancy Bentley. Thank you, Nancy!
  • In Region 9 David Carey of ABIL in Phoenix was selected in recognition of his years of service to people with disabilities. David organized advocates against funding cuts to education, child care subsidies, health care and other human services. David single-handedly convinced reluctant coalition members to have a demonstration at the state Capitol. Over 500 people attended the protest at the Arizona State Capitol that would not have happened without David’s leadership and advocacy. Alright, David!
  • Linda McClain, Executive Director of CORD in Spokane, Washington was chosen to receive the Advocacy Award in recognition of her leadership and advocacy on the local, state, and national levels. From pushing city council members from a number of cities in her CIL’s service area to improve disability services to working on the national level with Representative McMorris-Rodgers (R-Spokane), Linda is a tireless advocate for people with disabilities! Keep it up, Linda!

National Advocacy Awards

Dan Kessler presented NCIL’s 2010 President’s Award to Jorge Pineda in recognition of his 15 years as NCIL’s Accountant. However, Jorge was much more than just an Accountant. Jorge was NCIL’s I.T. guy and the entire HR department all-in-one. Jorge was also known for bringing his entire family, all the way from Mexico City, to help with NCIL’s conference every year. He drove the support van in our March and would spend the afternoon afterwards taking phone calls and helping to pick up anyone that was having trouble or had a broken powerchair. Jorge is an important member of the NCIL family and very deserving of NCIL’s 2012 President’s Award.

Next, Dan Kessler introduced Senator Tom Harkin to present the Frank Harkin Memorial Award to HHS Secretary Kathleen Sebelius. Secretary Sebelius was honored for her leadership and unwavering support of the Affordable Care Act that promises to provide healthcare to so many more Americans with Disabilities and protect and contain costs for those that already have insurance. Tom Harkin gave a rousing speech to the crowd before presenting the Secretary with the award. Secretary Sebelius thanked NCIL for the award and spoke of the work that she and others at the US Department of Health and Human Services have done to increase access to home and community based services for people with disabilities.

For the Max Starkloff Lifetime Achievement Award, Dan Kessler invited Colleen Starkloff onstage to help him present this year’s award. Colleen spoke of how much NCIL meant to Max, NCIL’s founding President. Dan and Colleen announced this year’s recipient of the award, Pat Figueroa, who passed away in April of this year. Most recently associated with the Independent Living Center of the Hudson Valley, where his wife Denise is Executive Director, Pat Figueroa founded the Center for Independence of the Disabled New York in 1978 and was their first Executive Director. Pat was not only a dedicated advocate, but also a writer and an artist, many times applying his skills to support the Movement and people with disabilities. Pat’s wife Denise accepted the award on his behalf. Denise spoke of how much this award would have meant to Pat and just how important the Independent Living Movement was to him.

Kelly Buckland and Lou Ann Kibbee presented the Corey Rowley National Advocacy Award to Andy Imparato for his legislative work as senior council and disability Policy Director for the US Senate committee on health, education, labor, and pensions; chaired by Senator Tom Harkin. Lou Ann shared Andy’s lengthy list of accomplishments and work in the disability movement before moving on to the Senate. Kelly thanked Andy for his leadership as CEO of the American Association of People with Disabilities and legislative support since moving to the Senate in 2010. Andy thanked NCIL and spoke of his early days in the Independent Living Movement in Massachusetts. Andy shared with the crowd that his involvement in the Movement taught him that small grassroots organizations like CILs, SILCs, and NCIL are critical to listen to when developing policy and that is something he and Senator Harkin take very seriously.