This is a very interesting press release from the CDC regarding disability statistics.

Press Release

Thursday, July 30, 2015

Contact:http://www.cdc.gov/media" target="_blank" rel="noreferrer noopener">CDC Media Relations

(404) 639-3286

CDC: 53 million adults in the US live with a disability

New report provides state-by-state data on disability types

In the United States, one out of every five adults has a disability, according to a new study published by the Centers for Disease Control and Prevention. The most common functional disability type was a mobility limitation defined as serious difficulty walking or climbing stairs -- reported by one in eight adults, followed by disability in thinking and/or memory, independent living, vision, and self-care.

The researchers found that the highest percentages of people with disabilities are generally in Southern states, for example Alabama (31.5 percent), Mississippi (31.4 percent), and Tennessee (31.4 percent). The report did not determine why differences occur by state; however, states in the South tend to have some of the higher rates of chronic diseases, such as heart disease and diabetes, which may also be associated with disability.

We are all at risk of having a disability at some point in our lifetime, said CDC Director Tom Frieden, M.D., M.P.H. Health professionals and health care systems need to meet the needs of this growing population.

The report also revealed that non-Hispanic black (29 percent) and Hispanic (25.9 percent) adults were more likely to have a disability than were white non-Hispanic (20.6 percent) adults. Those with lower education levels, lower incomes, and those who are unemployed were also more likely to report a disability.

For the past 25 years, the Americans with Disabilities Act (ADA) has made a positive difference in the lives of those who have disabilities by ensuring better access to buildings, transportation, and employment. Access to preventive health care is also critically important for those with disabilities, said Georgina Peacock, M.D., M.P.H., Director of CDCs Division of Human Development and Disability. Many of the health issues that people with disabilities face may be addressed by making sure they have access to health promotion programs and health care services, including preventive health screenings, throughout their lifespan.

CDC is committed to protecting the health and well-being of people with disabilities throughout their lives. Through its state-based disability and health programs and national collaborations, CDC will continue to work to reduce health disparities faced by people with disabilities by facilitating their inclusion in public health surveys, public health programs, emergency preparedness and planning efforts, and accessible health care services. To work toward this goal, CDC provides data, information and resources for public health practitioners, health care providers, and people interested in the health and well-being of people with disabilities.

Although disability information has been collected in national surveys for many years, this was the first time that functional disability type was included in the Behavioral Risk Factor Surveillance System (BRFSS). The BRFSS is an annual, state-based telephone survey conducted by states in collaboration with CDC that gathers information on demographics, health status, health behaviors and disabilities.

More information about CDCs work to support inclusive public health and health care settings is available athttp://www.cdc.gov/disabilities" target="_blank" rel="noreferrer noopener">http://www.cdc.gov/disabilities.

Source:http://www.cdc.gov/media/releases/2015/p0730-us-disability.html

Survey: Air Travel for People Who Use Wheelchairs

Funded by Paralyzed Veterans Administration

If you use a wheelchair and have flown in a commercial aircraft in the last 5 years, we are interested in your input. Please fill out the survey by going to the following SurveyMonkey website:

https://www.surveymonkey.com/r/airtravel_survey

Participants must meet the following criteria:

• 18-70 years old

• Non-ambulatory

• Use a manual or power wheelchair

IRB Project #: STU00200488 Funded by: PVA #3028

Co PIs: Peter Axelson MSME Beneficial Designs, Jessica Pedersen MBA OTR/L, ATP/SM

Questions: contact Jessica Pedersenjpederen@ric.org

IRB Principal Investigators: Linda Ehrlich-Jones PhD

The Rehabilitation Institute of Chicago is an academic affiliate of Northwestern University Feinberg School of Medicine

***Thanks to the Great Lakes ADA Center for this information.

Self-Determination Network News:August2015

Connect|Share|Learn|http://sdnetworkwi.org/

Theres still Time to Speak up about IRIS and Self-Direction!

The state budget eliminates IRIS as a separate Medicaid Waiver program, and folds self-direction under the umbrella of managed care. However, the Department of Health Services (DHS) must renew the current IRIS waiverset to expire at the end of 2015 so the IRIS program can continue to run until (and if) it is replaced by the new system.

Every chance to tell DHS what self-direction should look like is important. Submitting public comments on the current IRIS programeven though the state budget calls for self-direction to be folded under managed care in the new systemcan clearly communicate the elements of self-direction that people with disabilities and their families feel are important to retain in a new system.

The Wisconsin Board for People with Developmental Disabilities has provided us with information about how to submit comments to DHS about this. Comments are due by September 11^th. Find out how tolet your voice be heard!

Take our One-Minute Poll

In our last one-minute poll, we asked how you felt about the future of Long-Term Care in Wisconsin now that the State budget is passed. An overwhelming 75% of people reported that they are very concerned that the changes will harm the quality of life of the elderly and people with disabilities. 3% of people also commented about how they feel that legislature ignored advocates and about how its all about dollars instead of people. About 20% of people said that they are concerned, but think we need learn more about the changes before jumping to conclusions.

This month were asking if youre attending this years Self-Determination Conference. Take ourone-minute pollnow!

It Only Takes "Five"

Take five minutes to check out what's happening on the Self-Determination Network:

• Join the Discussion: We had an excellent discussion about the State Budget and the future of Long-Term Care during the Coffee Break that we had in late July.We encourage you to take a look at the summary and add your questions and thoughts.
• Watch: Watch this video of President Obama speaking about the 25^thanniversary of the Americans with Disabilities Act (ADA).
• Self-Determination Webinar: This will be a great webinar about self-determination. One of the presenters, Jonathan Martinis, will be a keynote speaker at this year's Self-Determination Conference in Wisconsin Dells. You can register for the conference by clickinghere.
• Call for Exhibitors: Exhibitor applications are now being accepted for the Across the Lifespan Conference.
• ADA Fight Is Not Over:This is a great article about the celebration of the 25th anniversary of the Americans with Disabilities Act (ADA) at the White House.
• Globalize the ADA: This is an interesting article about how we need to globalize the Americans with Disabilities Act.
• Behind the ADA: This is a terrific article by Robert L. Burgdorf Jr. about why he wrote the Americans with Disabilities Act.
• Breaking Barriers with the ADA: An interesting article about how the Americans with Disabilities Act improving lives for Americans with Disabilities.
• Community Living Record: This is a great article about how for the first time ever Medicaid is spending more on community-based services than on institutional care.
• Service Animal Rule Clarification: This is an informative article about how the Justice Department has issued a document that clarifies the service animal rules that were issued four years ago.
• ABLE Account Implementation Plan: An article about how state officials from across the country are meeting to develop a plan on how to implement the new ABLE accounts.
• ABLE Act Promotes Independence: This is a terrific article about how the ABLE Act will help Wisconsin families.
• Post news or start a discussion: It's easy to do and a great way to share information and network with others!

Member Spotlight

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 this month, we shine the Spotlight on Tricia Thompson. As a former special education teacher and a current IRIS consultant, she full-heartedly believes in self-determination and the power of making ones own choices. Stop by this monthsMember Spotlightand get to know Tricia!

Who should we shine the Spotlight on next?

Stacys Journal

This month Stacy shares about herspecial relationship with her parents. We encourage you to ask her questions and/or share your experiences as well.

New Members

Stop by to welcomeour newest members:

• Shes anIRIS Consultantwho wants to meet others who are interested in self-direction.
• This personworks on the ADA.
• Hes theCommunications Directorat the Wisconsin Board for People with Developmental Disabilities.
• Sheprovides technical assistance on self-determination and advocacyto teachers.
• Shes anIRIS Consultant Supervisor.
• He joined the SD Networkto learn.
• Thismotherwants to stay informed about services for her daughter.
• She works for an organization thatsupports individual to self-direct their services.
• Shes aBenefits Specialist.
• Shes aBenefit Specialistfor a county.
• Shes amotherof a young adult with special needs.
• Thismotherworks to assist families in navigating the school system.
• Hes theDirectorof Workforce Development at Goodwill Industries of South Central Wisconsin.
• Shes aSocial Workerwith Family Care.
• Shes anExecutive Director.
• Thisparentwants to keep informed.
• ThisBenefits Specialistparticipated in the Coffee Break.
• Thisoutreach coordinatorwants to keep up-to-date with the budget.
• Thissisterwants to stay up-to-date on legislative changes.
• She wants tolearn more about self-determination.
• She has ason enrolled in IRIS.
• She wants to stayinformed about happenings in the disability community.

Do you know someone who should join the Self-Determination Network? Spread the word and invite friends, families and other interested folks!

Upcoming Events

Here's a sample ofupcoming eventslisted on the Self-Determination Network:

• Medicaid Managed Care Forum: August 31^st, 9am to 4pm, State Capitol, Madison WI
• Webinar: Inclusive Sports, Recreation and Exercise for Individuals with Disabilities and the Americans with Disabilities Act (ADA) Standards for Accessible Design: August 26^th, 2pm to 3:30pm, Online
• The Fine Art of Balancing Protection with Self-Determination Webinar: September 22^nd, 1pm, Online
• Bringing Innovation to Light: What We Hold Dear in Dane County: September 30^th, 10am to 6:30pm, Madison Public Library, Madison WI
• Parents in Partnership (PIP): October 2^ndto 3^rd, Holiday Inn Express, St. Croix Falls WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 9^thto 10^th, Chula Vista Resort, Wisconsin Dells WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 9^thto 10^th, Tundra Lodge Resort and Conference Center, Green Bay WI
• Youth in Partnership with Parents for Empowerment (YiPPE): October 23^rdto 24^th, Sleep Inn & Suites Conference Center, Eau Claire WI
• Self-Determination Conference: November 9^thto 11^th, Kalahari Resort, Wisconsin Dells WI
• Across the Lifespan Conference: December 3^rdto 4^th, Chula Vista Resort, Wisconsin Dells WI
• Wisconsin Transition Conference: February 18^th to 19^th, Kalahari Resort, Wisconsin Dells WI

Post your eventon the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions? ContactStacy Ellingen.

The Self-Determination Network is powered by In Control Wisconsin and supported financially by ourmembersandSponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.

This will be a great webinar about self-determination. One of the presenters, Jonathan Martinis, will be a keynote speaker at this year's Self-Determination Conference in Wisconsin Dells. You can register for the conference by clickinghere.

NLRC Presents: The Fine Art of Balancing Protection with Self-Determination Webinar

All adults, regardless of ability, have a basic right to make choices about how they want to live their lives. Empowering older adults and people with disabilities to actively participate in personal decision making improves life outcomes and can reduce the risk of abuse and exploitation. At the same time, people who need assistance with decision making often are at greater risk of abuse, and protection and advocacy services are critical to both prevention and response efforts.

Striking the right balance between empowerment and protection can be a challenge. But it is possible.

In this webinar, presenters David Godfrey of the American Bar Association and Jonathan Martinis of Quality Trust for People with Disabilities, will address the signs of abuse, neglect (including self-neglect), and exploitation. They will cover tools to enhance communication with people with differing abilities and best practices for promoting self-determination and choice in a way that mitigates risk while preserving the human right to direct one's own life. The session also will explore the application of the Supported Decision Making model to assist people in making choices.

Clickhttps://attendee.gotowebinar.com/register/8352458040898429186" target="_blank" rel="noreferrer noopener">hereto register for the webinar, which is sponsored by the National Legal Resource Center.

Its pretty unusual for a 30 year old to say that their parents are their best friends, but for me, this is a true statement. Yes, I realize its not close to Mothers or Fathers Day, but, due to several things that have been going on the past few months, I find myself reflecting on just how true that statement is. My mom and dad are my best friends. Im not really sure if this common among adults with significant disabilities or not, but Im so fortunate to say, for me, this is 100% true!

Since I was the first grandchild on both sides of the family, my traumatic birth (which resulted in me having Cerebral Palsy) sent a scare through the entire family. Seconds after I was born, my parents realized their lives would never be normal again. Although, they didnt know the severity and impact of my disability until months and years later, I cant fathom how scary my birth must have been for them. I realize my mom and dad could have easily given up on me right then and there, but, instead, they chose to take on the challenge of giving me the best life they possibly could.

There are far, far too many examples to share, but my parents have done everything they can to make my life as normal as possible. They have adapted so many things in order for me to partake in so many activities that I otherwise would not have been able to. Everything from adapting sleds and swings, to chaperoning school field trips and dances so I could attend, to giving me chores and punishing me just like any other kid, to driving me around and being my assistant so I can partake in various social events, to fighting insurance companies, to attending countless therapies and medical appointments with me, to building an accessible house and buying wheelchair accessible vans the list goes on and on. As I mentioned in my last journal entry, thanks to my parents, travel has been a big part of my life. Mom and dad have said that they feel its their responsibility to show me as much of the country (and beyond) as possible. As I get older, I realize how lucky I was to have been able to see and experience so much when I was younger.

Weve had many conversations in the recent years about my disability. I find it interesting that they think the early years were hardest. Obviously, my birth was dramatic for them, but I think it was hard on them watching other kids who were younger than me progress physically, and then having to explain to me why I wasnt able to do those things. I also think it was hard for them to deal with peoples reactions. As I got older, mom and dad taught me how to deal with peoples reactions to my disability.

When I graduated high school and entered adulthood, I think my parents feared what would happen to me. As much as they encouraged me to attend UW-Whitewater, I know they had doubts about me being able to make it on my ownespecially my dad. It took a couple months, but it was a huge relief for them when they realized with the right supports I could live on my own. This relieved them because they then knew that after they are gone, I would physically be all right without them.

Even though, I live on my own in Oshkosh now, I still depend on support from my parents a lot. Although, I try hard to deal with as much as possible on my own, my mom and dad assist me with quite a bit. Whether its dealing with a wheelchair shuffle (like this summer has been) or dealing with care issues, theyre always right there to help. I cant even begin to list all of the things that my parents still do for me.

Having said that, I think the most important thing they do is be there emotionally for me. Its not easy to admit, but, as strong as I try to be most of the time, sometimes I have moments. As hard as I try to see happiness through other peoples eyes, sometimes it can be really hard to witness my younger sister, younger cousins, and my friends experiencing those normal milestones in life knowing its very unlikely Ill ever reach them. Things like watching others date, get married, and have babies can be very hard. Its not that Im not happy for themI amits just hard accepting that those things may likely never happen to me. When Im having those hard moments, mom and dad are always there for me with an ear to listen and a shoulder to cry on. I also have a hard time when things related to my disability get in the way of my life. Together we work through those rough patches, and weve learned to rejoice in the small milestones that I reach that may seem insignificant to most people.

So, yes, Im very proud to say that my mom and dad are my best friends. Thanks to their continued abundance of encouragement, support, and love I am the person I am today. Im so blessed to have such great parents!

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.

This is a great article in theGreen Bay Press Gazettewritten by Shelby Le Duc about how the ABLE Act will help Wisconsin families. She explains that ABLE accounts will allow people with disabilities to save for the future without using their benefits. She has some great quotes from families in here.

Accounts promote independence for disabled

Disabled residents previously risked health benefits if they saved more than $2,000; now they can save up to $330,000

By Shelby Le Duc

Saving money for the future is something most are taught at a young age.

But the ability to do so is an opportunity often taken for granted.

Until last month, Wisconsin residents with disabilities were limited to a savings account of no more than $2,000. Thats clearly not enough to sustain a long, productive and independent life, yet saving more than $2,000 would result in the loss of health insurance and other government means-based benefits.

That ended in Wisconsin in June with the signing of a state budget bill that created a way for disabled residents and their parents to save for the future. Achieving Better Life Experience, or ABLE, accounts are tax-advantaged saving accounts that work much like the 529 college saving accountsthey both have a maximum balance of $330,00and remain separate from public benefits for income, health care, food and housing assistance.

Robbin Thomas Lyons of Delafield has for years championed a change in the law in Wisconsin and nationally.

Her daughter, Kelly, has Down syndrome and her son, Reed, is on the autism spectrum. She said she knew prior to Kellys birth that college and marriage would still be possibilities for her daughter. What kept her up at night was knowing Kelly would not be able to save for those things.

I want her to be able to do anything she thinks she can do, Thomas Lyons said. So, every year we go to Congress and they finally came around and saw that this was the most important bipartisan, bicameral law to be passed in a very long time and will help parents like me sleep at night.

Thomas Lyons is president of Wisconsin Upside Down, an organization aimed at enhancing the quality of life of individuals with Down syndrome in southeastern Wisconsin. She spoke Monday at an appearance in Green Bay with other disability-rights advocates and state Rep. John Macco, R-De Pere, who sponsored creation of the accounts.

Kelly Lyons, like most 12-year-olds, is already thinking about what she wants to do for a living. She said she sees an ABLE account as her ticket to a brighter future.

I need ABLE to save money for college and to buy a house some day, she said. When I grow up I want to be a dental hygienist. ABLE can help my dreams come true.

Lisa Pugh, public policy director for Disability Rights Wisconsin, said state approval of ABLE accounts was a lengthy process that required a great deal of commitment by supporters.

These are people who have traveled to the U.S. Capitol, sent numerous letters, testified before committees and made many calls because they believe strongly this law will make a huge difference and will be life-changing for them and approximately 50,000 others in the state of Wisconsin, Pugh said.

Macco said the accounts are a steppingstone to a broader goal.

This is not about an account for people to save money. For me, this is about freedom, Macco said. Its about flexibility and taking that portion of our citizens and moving them into (being) contributing citizens and no longer intentionally segregating them and pushing them off to the side. I think there is more to this than just the savings tool.

Source: http://www.greenbaypressgazette.com/story/news/local/2015/08/10/accounts-promote-independence-disabled/31435241/

An interesting article inDisability Scoopby Meredith Rodriguez about how state treasurers from across the US are meeting to discuss how to implement the ABLE accounts.. ABLE accounts will be tax-exempt accounts to help cover expenses for people with disabilities.

State Officials Plan For New ABLE Accounts

By Meredith Rodriguez

CHICAGO State treasurers from across the country are meeting in Chicago this week to discuss how to implement a tax-exempt plan to help families cover the expenses of people with disabilities.

The new ABLE accounts, which stands for Achieving a Better Life Experience, will operate much like 529 college savings plans in that the growth is federal tax-free and families are allowed to withdraw money for qualified expenses tax-free.

This is not just an Illinois issue, the states Treasurer Michael Frerichs said at a Thursday morning news conference in Chicagos Thompson Center. ABLE accounts could benefit hundreds of thousands of people across the country.

Illinois families who have children with disabilities also spoke Thursday.

Patti Vasquezs life entered a state of emergency 10 years ago when her son, Declan, was born missing the fibers connecting the left and right sides of his brain. The family was told that he may never walk, talk or progress past the intellectual capability of a 2-year-old, said Vasquez, of Chicago.

Although Declan started walking at 3, she said he still doesnt speak. He learned how to point at 8, she said, and how to give a kiss at 9.

We have a hard time thinking about the future, Vasquez said. Will my beautiful, blue-eyed boy who loves water and dancing to Mozart and hugging, will he be loved the way he deserves?

She said things like the ABLE Act, which was passed into federal law with bipartisan support in December, give her family hope. Each state has the option to implement the program, and it was signed into law in Illinois at the end of July.

More than 20 states have enacted similar legislation, the Illinois treasurers office estimated.

In Illinois, the treasurers office will be responsible for the administration and implementation of ABLE accounts, which can be used to pay for long-term and short-term qualifying expenses, such as building a ramp to enter a home or paying for speech therapy.

The treasurers office estimates that in Illinois there will be 40,000 participants, although more than 120,000 people could qualify.

At the conference on Thursday and Friday, which includes 88 participants from 35 states, Illinois is working with other states to presentfederal rule makerssuggestions on how to implement the process efficiently and make the plans as user-friendly as possible. Illinois is also exploring a collaboration with other states, Frerichs said.

Frerichs declined to give a specific timeline for Illinois, but Betty Lochner, chair of the College Savings Plans Network, said it will take most states about a year to set up the program.

So were really at the very beginning of a big mission, Lochner said.

Source:http://www.disabilityscoop.com/2015/08/07/state-plan-able-accounts/20542/

Speak up about IRIS and self-direction!

Public Comments due September 11, 2015

This is an interesting articleDisability Scoopwritten by Michelle Diament about how federal officials have clarified the service animal rules. She explains that the Department of Justice had so many questions about the rules they issued four years ago that they issued a revised document including37 questions and answers covering everything from what type of work a service animal might perform to how they are trained and what sort of animals qualify.

Justice Department Clarifies Service Animal Rules

By Michelle Diament

Federal officials are further clarifying the rights and responsibilities of people with disabilities who rely on service animals amid continued confusion.

Four years ago, the U.S. Department of Justice issuedrevised ruleson service animals under the Americans with Disabilities Act. But the agency has received so many questions since that time that its trying again with a new 8-page technical assistancedocument.

The latest effort includes 37 questions and answers covering everything from what type of work a service animal might perform to how they are trained and what sort of animals qualify.

The ADA requires state and local government agencies, businesses and non-profit organizations (covered entities) that provide goods or services to the public to make reasonable modifications in their policies, practices or procedures when necessary to accommodate people with disabilities, the Justice Department states. Accordingly, entities that have a no pets policy generally must modify the policy to allow service animals into their facilities.

The document defines a service animal as a dog that has been individually trained to do work or perform tasks for an individual with a disability that is directly related to their disability. No certification, licensing, identification or documentation is required.

Service animals can accompany people with disabilities in a wide variety of circumstances including at salad bars or other self-service food lines, in ambulances and hospitals and at hotels where they should not be limited to or charged extra for pet-friendly rooms, the Justice Department said.

Under federal law, businesses looking to assess if a dog is a service animal may only ask if the animal is required due to a disability and what work or task the dog is trained to perform.

Source:http://www.disabilityscoop.com/2015/07/31/justice-service-animal-rules/20516/

This is a fantastic article inDisability Scoopwritten by Shaun Heasley about howMedicaid is spending more on community-based services than on institutional care. This is the first time ever that this has happened. This is a very interesting article.

Spending On Community Living Hits Record

By Shaun Heasley

For the first time ever, Medicaid is spending more on community-based services than on institutional care.

A new report finds that more than half of Medicaid spending on long-term services and supports went toward home and community-based services during fiscal year 2013, which spannedfrom October 2012 through September 2013.

During that time, state and federal Medicaid programs allocated $146 billion toward long-term care services, 51 percent of which went to community-based options. Thats up from 49 percent the year before, according to thereportproduced for the Centers for Medicare and Medicaid Services.

For the third year in a row, spending on home and community-based services grew while funding for institutional care declined.

The figures account for Medicaid services provided to people with developmental disabilities, older people and those with physical disabilities as well as individuals with serious mental illness or emotional disturbance. Medicaid pays for more long-term services and supports than any other provider in the nation.

There was an uptick in home and community-based services spending for all of the populations served, the report found, though people with developmental disabilities were by far the most likely to be served in this manner.

Despite the national trend toward community-based offerings, however, the situation varies by state. In about half of states, the majority of Medicaid dollars were still directed to institutional care, the report found.

Source: http://www.disabilityscoop.com/2015/07/22/spending-community-record/20457/