by Bruce Koppenhoefer
The 2019 DisABILITY Conference is behind us. The planning committee members are catching their breaths and catching up on all the work that had to be on hold while they worked on the conference. We’re also collecting the final numbers, but if pre-conference numbers hold up, it was a record-setting event, the largest in the history of this conference. Attendance at our Tuesday Awards Luncheon was more than 400 people. Thanks to all of the attendees, sponsors, exhibitors, and volunteers that contributed to it being such a tremendous success.
For those of you who weren’t able to attend, or maybe were able to attend only part of the conference, I’d like to provide a recap of sorts. I obviously couldn’t attend every session, but I’ll provide a brief review of those I did attend based on my notes.
The conference opened with nationally prominent self-advocate Liz Weintraub. This pint-sized dynamo of a speaker shared her story of overcoming disabilities to achieve education and positions of national leadership in the realm of disability policy and rights. She focused her story on the difference between inclusion, the recognition of equality and the opening of doors, and belonging, the much deeper and emotionally satisfying process that all people seek within their communities.
Liz was followed by Nicole Jorwic from The Arc National organization. Nicole provided some history of The Arc and discussion on individual empowerment and self-advocacy. She emphasized the fights by The Arc to protect Medicaid benefits that are so incredibly important to the disability community, which she summed up with, “If you’re not at the table, you’re on the table.” A key statistic that Nicole presented was that the costs for care in community-based settings are 20 percent less than costs for institutional care.
Tate Fall discussed the Help America Vote Act (HAVA) and provided an overview of how it addresses accessibility and rights. She also discussed the need for strong training of poll workers to assure they know the rights of individuals with disabilities when it comes to voting. Tate conducted a more detailed breakout session on Tuesday with a lot more details on the voting rights for individuals with disabilities, including having audience participation on a series of examples of the types of barriers that people with disabilities may encounter when attempting to vote and the actions that can be taken.
The final presenter for the afternoon was Joseph Mancini with The Arc of Philadelphia. Joseph showed an example of how his chapter, utilizing all volunteer labor and working with a number of community partners, was able to acquire space at the Philadelphia airport and build out a sensory room, to help persons with autism adapt to the challenges of commercial flight. The initiative was done under the auspices of The Arc’s “Wings for All” program, which has supported similar initiatives in airports across the country.
Monday closed with a screening by Tash Alabama of the film, “Intelligent Lives.” This highly regarded documentary looks deeply at the issue of how standard IQ tests can yield a false determination of the true potential of individuals with I/DD. While it primarily follows the story of one individual’s achievements, as told by his father, it also incorporates the stories of three individuals with I/DD whose accomplishments far exceeded the expectations others placed on them as a result of batteries of standard tests.
The day began with Diane Stewart providing an overview of the Enable Savings Plan. This program allows the establishment of tax-free savings plans for individuals with disabilities to help fund a variety of support services and items that they may need over their lifetime. The plan allows contributions of up to $15,000 per year, which may come from any relative, friend, etc. Plan owners may select from three investment options, growth, moderate, and conservative.
Anita Archie, with ADECA (Alabama Department of Economic and Community Affairs) followed with a discussion of the upcoming census and its importance in maximizing the share of federal funding Alabama receives for services to the I/DD community. Included in her presentation was a discussion of the grants available (between $10,000 and $40,000) to qualifying programs for organizations that serve under-counted groups of the population.
I was able to attend two breakout sessions that morning. The first was by Nicole Jorwic who gave a more in-depth look at the many issues The Arc is following and advocating for or against. These include the following:
- Protecting Medicaid from attempts to convert it to either a block grant program or a per-capita-cap program
- Empower Care Act making sure the “money follows the person” when people convert from institutions to community-based services
- AbleAge Act: raising the qualifying age limit of the Enable Act from 26 to 46
- Electronic Visit Verification
- HCBS Rule
- New FAQ Document
- DSP Turnover
- HCBS Infrastructure Act
- Institutional Bias
The second breakout session I attended was Kathy Sawyer’s talk on Understanding Olmstead. This was the landmark legal case that challenged the ADA’s requirement that individuals be placed in community settings. The Supreme Court upheld the requirement compelling States to provide community settings even if sufficient institutional settings were available. The decision also laid out the requirements for States to develop a plan to implement moving individuals into community settings. The court stated that such plans must be specific and measurable, proceed at a reasonable pace, identify specific groups in each type of segregated setting, and provide funding to meet the specific goals.
I finished the morning at what was supposed to be a screening of “Bottom Dollars”, a documentary about the problem of paying subminimum wages to people with disabilities. Due to technical problems, they ended up showing “We Have Choices”. This was an inspirational assembly of stories of individuals with wide ranging disabilities, physical and/or mental, who have managed to become meaningful members of their communities, in some cases with significant support and in others with minimal support. The bottom-line message was that people with disabilities should be allowed to self-determine their lives. These are the types of stories that we need to disseminate more broadly so that the general population understands the extent to which people with intellectual and developmental disabilities contribute to and belong in their communities.
Our luncheon speaker was John Mascia, president of the Alabama Institute for the Deaf and Blind. John used a story about his own son and his little league aspirations to communicate the message that we shouldn’t let our own concerns about a loved one’s prospect for failure restrict their opportunities for achievement. It was a great story and a greater message.
John’s talk was followed by our annual Statewide Awards Luncheon, emceed by news anchor John Holder and Miss Alabama 2009 Liz Cochran. A full list of awards and winners is available on our conference web site. These were a large group of very deserving individuals, and you should congratulate them if you get the chance.
As mentioned earlier, I was able to catch Tate Fall’s presentation on Accessible Democracy, a subject of critical importance as we approach the 2020 election cycle, with many issues of serious importance to the I/DD community on the table, either directly of through or elected representatives. Tate is with ADAP and encourages you to contact them with any questions or concerns you have about your rights to vote.
I missed the 3 pm breakout sessions but very much enjoyed the Transition to Work panel discussion. State Senator Linda Coleman Madison, self-advocate R.J. Nealon, and self-advocate Knesha Jones took turns addressing a variety of employment issues centering on the value and the dignity of work. Some of the issues addressed included transportation challenges, opportunities access, which was described as eliminating barriers rather than guaranteeing jobs, and accommodations on the job.
Tuesday night’s dance party was a high energy, fun event. Lots of dancing, food, and door prizes. We also had a visit from Babe Ruff, mascot for the Birmingham Barons minor league baseball team. The dance party has become a conference staple, producing lots of smiles of enjoyment.
Shannon Ammons, of the Alabama Association of Non-profits, gave my favorite presentation of the conference, titled “Advocacy Boot Camp”. She described the four types of advocacy, Legislative (lobbying), Self, Peer, and Cause Advocacy. She further discussed the need to define the goals of your advocacy, such as education, fund raising, policy change, or litigation. Within these goals are elements that require defining, as follows:
- What change is intended/desired
- What audience can help
- What form of advocacy will be employed
- Who else cares—building networks
- Relationships, especially thanking supporters
She also spent time on the need for effective storytelling to help connect with the audience. It was well presented and a true encouragement to get involved in advocacy.
The conference closed with the inspirational presentation by Tametria Conner-Dantzler, a former TV news personality who left that role to start a non-profit organization (DATS MOM) after her son was diagnosed with autism. She addressed the issues of being a parent of a child with a disability and stressed the need to be the expert (doctors don’t always know it all) and to be fearless in your advocacy for your child. It was a great way to close out what was probably the best to date (in my opinion) in our series of disability conferences.
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If you attended the conference and would like to provide reviews of other sessions not covered here, please email them to us. We’d love to share them with our readers in order to proved a more complete picture of the conference and its important impact on our community.