News
ADMINISTRATION FOR COMMUNITY LIVING: The Importance of Data in Achieving Health Equity for Individuals with Intellectual and Developmental Disabilities
By SD Network, 2019-10-31
The Importance of Data in Achieving Health Equity for Individuals with Intellectual and Developmental Disabilities
By Julie Hocker, Commissioner, Administration on Disabilities
How many people are currently living in the United States with Intellectual and Developmental Disabilities (IDD)?
What health problems do individuals with an IDD frequently have?
How many individuals with IDD have access to health care?
The answers to questions like these are critical to developing policies and services that effectively support the health and well-being of individuals with IDD and their families.
In other words, improving health outcomes and health equity require good policies. Good policies require good data.
Unfortunately, when it comes to understanding the lives and health experiences of people with IDD, there is still a lot we do not know. This is in part because individuals with IDD are often left out of national health surveys.
To address this gap and ultimately achieve greater health equity, ACL and our federal partners across the U.S. Department of Health and Human Services worked with researchers, community partners, individuals with intellectual and developmental disabilities, and other stakeholders to develop two reports which were released earlier this month.
The first report, “Working Through the Data Conundrum: Identifying People with Intellectual and Developmental Disabilities in National Population Surveys,” recommends new questions that could be used on national population based surveys, such as the National Health Interview Survey, to identify individuals with IDD. This would allow us to collect information about the health status and number of Americans with IDD. ACL is now working with the National Center for Health Statistics at the Center for Disease Control to test the recommended set of questions.
The second report, “Enriching our Knowledge: State and Local Data to Inform Health Surveillance of the Population with Intellectual and Developmental Disabilities,” explores how state-level data can be used to know more about the health status of the IDD population. The report highlights the following best practices from four states:
- California has been collecting data on race, ethnicity, and language within the IDD population to work towards culturally competent services.
- Washington has been collecting data on people with IDD who are not receiving state services, a population missing from administrative data sets.
- South Carolina’s “data cube” brings together administrative data from a variety of sources to identify trends by age, gender, race, disability type, and more.
- Ohio hired a “super user” to create data linkages that allow the state’s IDD department to use Medicaid data to better understand the populations they serve.
I hope these reports will shine a new light on the importance of data in making sound policy decisions and spark much needed conversations and action to achieve greater health equity for the population we serve.
ACL staff also contributed to several articles published in the October issue of the journal Intellectual and Developmental Disabilities, titled, “On Counting What Matters: Finding Adults With Intellectual and Developmental Disabilities in Population Health Data,” Free abstracts from the issue are available to the public.
All of us at ACL are excited about this momentum. We look forward to building on it to move the conversation forward and advance policies that achieve greater health equity
ADMINISTRATION FOR COMMUNITY LIVING: HUD Announces Funding Opportunities to Expand Housing for People with Disabilities
By SD Network, 2019-10-31
The U.S. Department of Housing and Urban Development (HUD) announced a combined $112 million available to expand the supply of permanent affordable housing for very low-income persons with disabilities.
Funding is available for the two components of the Section 811 Program:
The available funding includes $75 million in capital advances for the development of new supportive housing for this vulnerable population and $37 million in rental assistance to eligible housing agencies working closely with state health and human services or Medicaid agencies.
Section 811 Capital Advances
HUD is offering up to $75 million in capital advance funding to eligible nonprofit organizations to fund innovative permanent supportive housing models that will be at the forefront of design, service delivery, and efficient use of federal resources. Applicants are encouraged to establish formal partnerships with health and human service agencies or other organizations (such as centers for independent living) with a demonstrated capacity to coordinate voluntary services and supports for persons with disabilities to enable them to live independently in the community.
To encourage development within Opportunity Zones, HUD will award two preference points to applicants seeking to construct or rehabilitate developments in qualified Opportunity Zone census tracts. Read HUD’s Section 811 Capital Advance funding notice for more information. The closing date for applications is February 10, 2020.
Section 811 Project Rental Assistance
HUD is making up to $37 million in rental assistance available to eligible housing agencies working closely with State Health and Human Service/Medicaid Agencies. Eligible applicants include any housing agency currently allocating Low-Income Housing Tax Credits (LIHTC); participating jurisdictions administering affordable housing programs assisted through HUD’s HOME Investment Partnerships (HOME) Program; and/or housing agencies operating similar federal or state affordable housing programs.
Eligible applicants are encouraged to align their Project Rental Assistance Programs with state or local initiatives that will directly increase development of permanent supportive housing for extremely low-income persons with disabilities. Read HUD’s Section 811 Project Rental Assistance funding notice for more information. The closing date for applications is February 10, 2020.
U.S. Access Board to Assess Feasibility of Wheelchair Restraint Systems on Aircraft
By SD Network, 2019-10-31
The inability to use one's wheelchair on airplanes makes air travel very difficult, if not impossible, for many people with disabilities. It requires multiple transfers between boarding chairs and aircraft seats, posing injury risks. Airline seats are a poor alternative to personal wheelchairs which are typically customized for the user's safety, comfort, and specific medical needs. Further, passengers' wheelchairs are stowed in the cargo hold and often damaged, mishandled, or lost as a result.
To address these challenges, the U.S. Access Board is undertaking a study to assess the feasibility of equipping aircraft with restraint systems so that passengers can remain in their wheelchairs on flights. Congress directed the Board to study this question in its most recent reauthorization of the Federal Aviation Administration. The Board has enlisted the Transportation Research Board (TRB), which is part of the congressionally chartered National Academy of Sciences, to conduct this assessment and to issue a report. The Board and TRB will consult the Department of Transportation, aircraft manufacturers, air carriers, and disability advocates in the course of the study, as directed by the act.
"The Board is eager to examine this issue which has the potential to make flying safer and more comfortable for thousands of people who use wheelchairs," stated Board Executive Director David Capozzi. "We look forward to building upon and advancing the work of other organizations who have provided critical leadership, advocacy, and research on this subject, notably All Wheels Up, Flying Disabled, and Paralyzed Veterans of America."
TRB will organize an expert panel to assess and evaluate the feasibility of equipping passenger aircraft with in-cabin wheelchair restraint systems. This panel will include experts in aircraft manufacturing, aeronautics, aviation safety, accessibility, disability policy, airline operations, and other disciplines. It will examine the design, engineering, and safety requirements for equipping aircraft with locking or tiedown mechanisms for non-motorized and motorized wheelchairs used as seats. If such restraint systems are found to be feasible, the panel will then assess how they can be used to accommodate passengers using wheelchairs through all phases of flight, from boarding to deplaning. A peer-reviewed report on the panel's findings will be published at the conclusion of the project and submitted to Congress. The report is expected by October 2021.
For further information on this study, contact Mario Damiani of the Access Board at (202) 272-0050 (voice), (202) 272-0066 (TTY), or damiani@access-board.gov.
Self-Determination Network News:
October 2019
Connect | Share | Learn | http://sdnetworkwi.org/
Join the Conversation!
We were so excited to see many of you again at this year’s Self-Determination Conference. What was your favorite part? What were some things that you learned? Do you have a neat story from the conference? Did something really inspire you? Let's keep the conversation going! Share your comments, questions, and ideas in this discussion!
At this year's conference, with support from an amazing team of people from different organizations, four self-advocates rolled out the Self-Determination Channel. You can watch the trailer below. We encourage you to watch, like, and comment on all the videos. Don't forget to subscribe to the channel and share it with your family and friends!
We want to congratulate this year's Diehard Award winners who were recognized at the Self-Determination Conference. These individuals received a Diehard Award for going above and beyond in supporting the lives of people with disabilities. Please help us congratulate and thank these people for their outstanding advocacy efforts:
- Lisa Pugh
- Shannon Webb
- Stacy Ellingen
The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.
For October, we shine the spotlight on Jean. With a lengthy résumé highlighting her advocacy efforts, now retired, she continues to help write the story of the revolution in disability access, rights, and choices. Stop by this month's Member Spotlight to get to know Jean.
Stacy’s Journal
"There will probably always be roadblocks and detours people with disabilities to overcome. Life is full of detours and roadblocks for everyone—not just those with disabilities. It’s hoping we handle and persevere through them that shows a person’s character!"
In this month's entry, Stacy talks about the accessibility roadblocks people with disabilities still face. Have you had similar experiences? We encourage you to share your thoughts and experiences as well.
Take five minutes to check out what's happening on the Self-Determination Network:
- Get Involved: Kurt posted about an awesome opportunity to help plan next year's Autumn Ability Fest. Find out how to get involved!
- Annual Report: The Wisconsin Board for People with Developmental Disabilities has released its annual report. Learn which two areas they focused on.
- Internet Essentials: According to a recent study, people with disabilities are less likely to use the Internet than any other group. Read about how Comcast is trying to make Internet affordable to everyone.
- Take Survey: The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about health insurance and health care services. Take the survey today.
- Outdoor Wheelchairs Available: Hiking is a common outdoor in Wisconsin. Now people who have mobility issues can experience the beauty of the outdoors like never before. Read about the 15 all-terrain outdoor wheelchairs available to people in Wisconsin.
- Straw Ban: The city of Madison is considering fining restaurants that give out plastic straws unless a customer asks for one first. Find out why the Disability Rights Commission doesn't support it.
- Disability Employment Awareness Month: President Trump proclaimed October as National Disability Employment Awareness Month. Learn what the proclamation talks about.
- Autism Insurance Coverage: Thanks to a new rule, all 50 states and Washington, D.C. have mandates that require some level of insurance coverage for the treatment of autism. Read about what's now required to be covered.
Upcoming Events
Here's a sample of upcoming events listed on the Self-Determination Network:
- Community Conversation: Finding Workforce Solutions: October 24th, 7:30a.m. to 9:30a.m., Red Lion Paper Valley Conference Center, Appleton WI
- Webinar: Supporting Employment For Transition-Age Youth With Disabilities: How ABLE Accounts And SSA Work Incentives Can Help!: October 24th, 1p.m. to 2:15p.m., Online
- Webinar: Bathing Facilities: October 24th, 1:30p.m. to 3p.m., Online
- Dan Johnson Advocacy Award Inaugural Award Ceremony: October 24th, 5p.m. to 7p.m., Sheraton Hotel, Madison WI
- ACAP Bowl-A-Thon: November 2nd, 11a.m. to 3p.m., Sunset Bowl, Waukesha WI
- Long Term Care Advocacy Team: November 12th, 2:30p.m. to 3:30p.m., Independence First, Milwaukee WI
- Community Resource Network (CRN) Southeast Wisconsin: November 13th, 3:30p.m. to 5p.m., Lakeland University, Milwaukee WI
- Transportation Consumer Advocacy Team (TCAT): November 19th, 1p.m. to 3p.m., Independence First, Milwaukee WI
The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.
Meet Jean. When she isn’t busy watching Ice hockey, she loves to travel and spend time with her grandchildren. With a lengthy résumé highlighting her advocacy efforts, now retired, she continues to help write the story of the revolution in disability access, rights, and choices. She fully believes it the power of networking. We’re so fortunate to her as a member of the Network!
What's your story? Tell us a little bit about yourself.
An account executive at a major public relations firm and publicist for two Wisconsin rehabilitation centers, Jean was recruited in 1969 as a volunteer by the National Spinal Cord Injury Assn/Milwaukee; an event that changed her life. She has lengthy experience in addressing the rights of people with disabilities to live successful lives in the community. As a volunteer with the Milwaukee Chapter of the National Spinal Cord Injury Association, she led Wisconsin efforts to incorporate accessibility into the statewide building code in 1973-76 and served as chair of the DIHLR building code committee when it completed a complete revision of the statewide code. She was also involved in the landmark court decision Barthel vs. Biernat in 1976 that was the first in the nation to prohibit a public transit system from purchasing new inaccessible buses until they had adopted a plan for serving the transportation disadvantaged. She was appointed by County Executive Bill O’Donnell to the board of directors of the Milwaukee County Transit System after that litigation was settled to provide oversight as the transportation services were developed and funded. During the late 1970s, she represented NSCIA on the state-level planning committees for the development of the Community Options Program (COP). In 1981, she joined the management team of former state representative James Wahner at the Milwaukee County Department of Health and Human Services. In that capacity, she was the team leader for Milwaukee’s implementation of COP for all populations. In addition, she co-chaired a Wisconsin statewide task force in 1987-88 that planned for the evolution of county nursing homes for people with serious mental illnesses following a US Supreme Court decision disallowing federal Medicaid funding for such facilities. She was the CEO/founder of Strategic Partners from 1991- 2019, a public services redesign firm. In that role, she has participated in projects relating to disability in Florida and Georgia.
As a retiree, Jean has seized/assigned/been recruited for the opportunity to write the story of the great Wisconsin revolution in disability access, rights, and choices that she, Dan Johnson, Ellen Daly, Mike Falconer and many others witnessed and fostered between 1965 and 1990. She explains that their thesis is simple and clear: Pre-ADA, Wisconsin led the way. Their website is www.Wisdisabilityrights.com. The Facebook page is Physical Disability Community-Wisconsin. “Both still need ongoing work,” she admits.
How are you involved with self-determination? Why did you join the SD Network?
Jean joined the Network in 2015 when she was working with ERI and Dan Johnson to organize the logistics and content for a memoir. They were also pulling together Wisconsin's response to ADA's 25 anniversary. She was involved in self-determination before there was a name for it. When they implemented COP in Milwaukee in 1984, consumer-directed care was the goal from the beginning. She explains that now, Electronic Visit Verification (EVV) is a major challenge, but Wisconsin has been given an extension. “Hopefully, they will get it right,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Jean states that Wisconsin has much better resources to support self-determination that most states. “IRIS is a national leader, and the work that Lynn Breedlove is doing internationally to spread the word and share information with countries in Europe is amazing,” she says. She also comments that consumers are now very sophisticated advocates. She believes that the efforts in 2018 when Congress was considering repealing the ADA were first class and very successful. She says, “it was the disability lobby that won that fight.”
What tip or resource would you like to share with people who want to be more self-determined?
Jean is a firm believer in networking. “It takes a village, so it is critical to network and spend time with other people who are in charge of their own care. Today, there are online forums and internet resources that didn't exist in the 1980s and early 1990s,” she explains.
What are some of your hobbies?
Jean is a big ice hockey fan. She loves to travel (she went to Scotland for three weeks this summer after working to improve her physical condition for a year) and loves spending time with her grandkids (both in high school). She’s a member of the board for her condo community and she has learned a whole lot about land use and overdevelopment as a result.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
It’s often said that there are five seasons in Wisconsin—Winter, Spring, Summer, Fall, and Road Construction. Obviously, calling road construction a season is a facetious way of saving that there’s a lot of road work that goes on from about April until November. Road construction often leads to delays and detours. Even though it’s necessary to keep the roads functional and safe, people usually get aggravated by it because it takes longer to reach their destination. Nothing really can be done about it other than leaving earlier or finding different routes. It’s part of life. Many people with physical disabilities don’t drive, but we often experience our own type of road construction so to speak—navigating through life in an “accessible” world.
Unless one is unable to, people don’t think about how many times they did step up and down from something each day. Whether it’s stepping in and out of a vehicle, stepping off a sidewalk to cross the street, or riding a escalator in an airport, people step up and down multiple times a day. People who have mobility issues often are very aware of these things because we have to find ways to overcome these simple steps that most people take for granted.
Thanks to the Americans with Disabilities Act, most public places are “accessible.” I put the word accessible in quotes because, in my opinion, it’s a relatively loosely used term in today’s day in age. Don’t get me wrong, I’m very grateful for the advancements in accessibility over the last 30 years. They have greatly improved my life and have allowed me to do and experience many wonderful things. However, with that said, there is still vast room for improvement. I also should mention that in many cases things that are deemed accessible often require people to go to great lengths in order to access whatever it is. Let me explain.
My parents and I recently returned from a trip to Las Vegas. We’re not huge gamblers, but I love the city because there’s always so much going on. Since I love going there, we usually go once a year. After the airlines ruined my power chair a few years ago, I only fly with my manual wheelchair, so I have to be pushed everywhere. I’ll write about getting through an airport in another journal another time, but everything from getting an accessible shuttle to our hotel to crossing the street we seemed to run into barriers.
We’re pretty seasoned travelers, so my dad had booked a wheelchair accessible shuttle to the hotel. We get there, and, of course, vans from the transport company were there; however, not the accessible one. We had to wait over a half hour for it. We finally get to our hotel and start walking around. There are lots of skywalk bridges between the hotels on the Strip. Each side of the skywalk has stairs, an escalator, and an elevator. In Vegas, elevators seem to frequently break down. Multiple times, we found ourselves stuck on a skywalk because an elevator was out. When that happened, we usually had to go back down in the elevator that was working and find a different way. Admittedly, very unsafe, but there were a few times where my dad justice tilted my chair back and took in me down the escalator (we found some nice people to stand in front of me in case I’d fall).
Skywalks weren’t the only thing. There were four steps up to the pool deck at our hotel. If people with mobility issues wanted to go to and from the pool area, they had to find a hotel employee who would have to call another employee to walk us through the back to get to and from it. This would take forever, so my dad just pulled my chair up and down the stairs each time. Our hotel’s casino had four stairs in the middle of the going to the lower tier where the main entrance was. The ramp was under construction all the while we were there. Again, they wanted people who used wheelchairs and scooters to wait to be escorted around the back. We never did this because we didn’t want to wait—my dad again pulled me up and down each time. When you have a limited time on vacation somewhere, the last thing you is wait to be escorted because you can’t do stairs.
Vegas isn’t the only place where these things happen. It’s really everywhere. Many places’ accessible entrances often aren’t their main entrances. While I’m thankful there’s an accessible entrance, it doesn’t seem fair to me that I have to use a different entrance then everybody else. Obviously, that’s just my opinion, and I understand that everything can’t be made totally accessible everywhere.
Though, our “road construction” isn’t what most people think of, it’s still aggravating. While it’s fun to fantasize about, I don’t think there will ever be a totality accessible world. There will probably always be roadblocks and detours people with disabilities to overcome. Life is full of detours and roadblocks for everyone—not just those with disabilities. It’s hoping we handle and persevere through them that shows a person’s character!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
DISABILITY SCOOP: Apartments Pair People With Developmental Disabilities, Older Adults
By SD Network, 2019-10-02
A new housing development in Minnesota is intended to help people with disabilities mingle with others outside of their own group. Bethesda, a Watertown, Wis.,-based nonprofit, is building the $18 million, 52-unit complex of apartments and townhouses for people with intellectual and developmental disabilities and people 55 and older. People will live independently in their own apartments, but mingle in common areas to socialize, take classes, exercise and practice yoga.
Thanks to a new rule, all 50 states and Washington, D.C. have mandates that require some level of insurance coverage for the treatment of autism. Insurance companies are now required to cover treatment for autism that is “medically necessary and appropriate and is not experimental,”
WHITEHOUSE.GOV: Presidential Proclamation on National Disability Employment Awareness Month, 2019
By SD Network, 2019-10-02
President Trump proclaimed October as National Disability Employment Awareness Month.. In the proclamation, it talks about how we need to reaffirm a commitment to fostering opportunity for people with all abilities to use their skills and talents in the workplace.
CHANNEL 3000: Disability Rights Commission votes not to support Madison plastic straw restriction proposal
By SD Network, 2019-10-01
The city of Madison is considering fining restaurants that give out plastic straws unless a customer asks for one first. This proposed ordinance's whole purpose is to cut down on the amount of waste, particularly of single-use plastics, in the city, but the proposal is drawing criticism from a number of groups. The Disability Rights Commission doesn't support it claiming many people with disabilities rely on straws.