A Father's pageant dance with his disabled Daughter touches hearts ; The Carey family

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With help from her adoring father, a 12-year-old girl with a rare genetic disease is dancing her way through pageants, winning trophies and stealing hearts.

Morgan Brasfield | TODAY contributor | June 2014

Studio ME Photography

McKenzie Carey has a rare genetic disease that has robbed her ability to walk, but thanks to her loving parents she's getting plenty of chances to dance.

A video that’s going viral shows McKenzie Carey being wheeled onstage by her father at a local pageant held earlier this month. Dad Mike Carey lifts his daughter into his arms and twirls, carries and dips her to the music before ending the dance with a beaming smile and cheers of support from the audience.

“Dancing with daddy makes her feel like she’s on top of the world,” Carey, of Dallas, Georgia, tells TODAY Parents. We’re pretty sure the feeling is mutual.

{If you want to lean more about her thin go to this website and if you want to help thin go to this

        http://www.mckenzieshope.com
        http://www.gofundme.com/mckenzieshope }

This isn't the first time McKenzie has wowed the crowd. She has competed in over 100 pageants and has performed the two-step, hip hop, the waltz and several other dances with her dad (who, while an enthusiastic partner, is clearly not a trained dancer).  

McKenzie is living with mitochondrial disease, which deprives her body of energy. In the US, approximately 1,000 to 3,000 children per year are born with a mitochondrial disease, according to the United Mitochondrial Disease Foundation. The disease confines McKenzie mainly to her wheelchair and limits her verbal communication to just a few words.

Studio ME Photography

McKenzie Carey

“Pageants give her the same opportunity as other children and show people that she can accomplish anything with a little bit of help,” says her mom, Tammy. “I just want the judges to look at her, not her wheelchair.”

Mitochondrial disease is classified as terminal, and most children diagnosed do not survive past their teen years. “We were told it would be a miracle if McKenzie made it to age 5,” Tammy says.

Her father says her personality shines through everything McKenzie does: “She’s like a puppy dog that doesn't say a word but always has their tail wagging. There’s no way you can be unhappy around her.”

Mike Carey spends the bulk of his days as a truck driver, supporting McKenzie and her siblings. His wife, Tammy, is a stay-at-home mom who has always had an affinity for pageants.

“She can’t take gymnastics or dance, but pageants are something she can do,” explains Tammy.

When McKenzie gets dressed up in her pageant finery and sees herself in front of a mirror, “she has the biggest smile on her face and claps her hands, which is what she does when she’s really excited,” Tammy adds. “That’s how we can tell she enjoys it and has fun, and dancing with daddy is just the icing on the cake.”

Mike always supported the pageant hobby, but never imagined he’d one day be performing alongside his daughter. At one memorable pageant in 2010, Mike noticed that his wife was particularly anxious while waiting for McKenzie’s turn onstage.

“My wife was sitting in the audience and was so stressed about McKenzie, so I decided to do something a little crazy.” remembers Mike. “I took McKenzie up on stage and did a wheelie with her wheelchair. Then I spun her around, picked her up and started doing a freestyle dance. The crowd went wild and gave us a standing ovation!”

Studio ME Photography

McKenzie Carey with her family.

McKenzie took home every award from that competition, and has been on a roll since, winning almost 20 competitions overall.

“Her room is full of trophies,” laughs Tammy. “I told my husband to put up more shelves because we’re out of room!”

When he’s not on the road, McKenzie and her dad practice their routines at home. “We rehearse with McKenzie out of the wheelchair and go through the motions. But she is getting so heavy and I am getting so old, that holding a sixty pound girl for four minutes kills me! You’ll see me smiling on stage but I’m crying on the inside!” Carey jokes.

The Careys say that they compete in pageants to raise money for the extensive treatments needed to help McKenzie with her disease. But mainly, they’re hoping to inspire people and to show what people with disabilities can do.

“Sometimes we’ll walk into a pageant and people will ask why we’re there,” says Mike. “Then we dance, and they say we've inspired them and given them a whole new perspective on life.”

McKenzie is scheduled to compete in three more pageants this summer.

“I never thought my life would turn out the way it is now, it’s just so unbelievable,” shares Mike. “I always tell people not to be sorry for us. McKenzie was put on this earth for a purpose. I believe she is an angel and I’m just her spokesperson, I’m just her arms and legs."

To learn more about McKenzie and her family, please visit their web page. 

http://www.today.com/parents/fathers-pageant-dance-his-disabled-daughter-touches-hearts-1D79842306

Is Texas Ready? Advocates for Disabled: End Texas' "Institutional Bias"

Disabled residents shred paper at the Mexia State Supported Living Center.photo by: Caleb Bryant Miller

by Corrie MacLaggan \ The Texas Tribune | June 23, 2014

On Monday, 15 years after a U.S. Supreme Court decision paved the way for some people with disabilities to move out of institutions and into community homes, advocates for Texans with disabilities called on state lawmakers to speed up that process here.

The anniversary of Olmstead v. L.C. — which advocates marked one day late with a press conference and cake — comes as Texas is weighing whether to close some of the state’s 13 living centers for people with mental disabilities. The Supreme Court held in Olmstead that institutionalizing a person with disabilities is discrimination if appropriate community-based services can be reasonably accommodated and the person doesn’t object to such a move.

The state’s Sunset Advisory Commission is set to meet Tuesday and Wednesday to discuss commission staffers’ recommendations to close the Austin State Supported Living Center and form a panel to choose five other centers to close. The state spends more than $600 million a year to operate the facilities, which are home to some 3,600 Texans.

“Fifteen years after Olmstead, it sort of begs the question: Why do we continue to do this?” asked Sarah Watkins, a board member of the Texas advocacy group Community Now!, which works to end what it sees as a bias in favor of institutions. Her remarks came at the press conference at the LBJ School of Public Affairs in Austin, where several dozen advocates gathered to celebrate Texans who have moved out of living centers and nursing homes.

“Our state is choosing to spend hundreds of millions of dollars on services that not very many people want anymore,” Watkins added.

The debate over the state-supported living centers is an emotional and heated one. Susan Payne, president of an advocacy group called PART, which includes family members of residents of state-supported living centers, said that not all residents at living centers are capable of living in community homes. The group is fighting to keep all the institutions open.

“Texas should be proud we offer a wide array of services for people,” Payne said. “One shoe doesn’t fit all.”

More than 100,000 Texans are on waiting lists for community-based programs. No one is waiting to get into a state-supported living center.

Carol Carpenter, 38, couldn’t wait to leave the Austin State Supported Living Center. A living center resident since age 18, Carpenter moved last year into a group home, where she said she is happy.

“No more nasty food,” she said at the press conference. “No more yelling at me. I don’t want to go back.”

Payne said advocates calling for the institutions' closure are not looking at the entirety of Olmstead, which says that it would be inappropriate to move people out of institutions if they wouldn’t benefit from community care.

“They should read all of Olmstead, and not just the part that pertains to their agenda,” Payne said. 

Gilad Edelman contributed to this report.

http://www.texastribune.org/2014/06/23/advocates-disabled-end-texas-institutional-bias/

Tell Congress: People with Disabilities, Older Adults and Veterans Want to Work! - online Petition!

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People with disabilities, older adults and veterans need access to employment services and supports to help them find jobs in their communities. Congress can make a big difference by fully funding key federal employment programs. Did you know: The unemployment rate of people with disabilities is regularly more than double the rate of people without disabilities. It takes an unemployed older worker much longer to get back into the workforce, 35 weeks on average, compared to 26 weeks for a younger worker. Young veterans are two times greater risk to become homeless than their non-veteran counterparts. Employment is critical for individuals with disabilities, older adults and veterans in achieving greater independence and economic self-sufficiency. Easter Seals helps these jobseekers develop new skills and find jobs in their communities through federal employment programs, such as Vocational Rehabilitation, Senior Community Service Employment Program and the Homeless Veterans Reintegration Program. Congress is now making its initial decisions on what level of funding to recommend for federal employment programs. On Tuesday, June 24, Easter Seals volunteers, clients and supporters from across the country will take to Capitol Hill as part of Easter Seals 2014 Advocacy Summit to urge Congress to increase access to employment services and supports by fully funding these federal employment programs. We need your voice too! TAKE ACTION: Tell Congress -- People with Disabilities, Older Adults and Veterans Want to Work!   Sincerely, Katy Beh Neas Senior Vice President - Government Relations Easter Seals and its affiliates are 501(c)(3) nonprofit organizations. Easter Seals Headquarters, 233 South Wacker Drive, Suite 2400, Chicago, IL 60606

Creating Accessible Mammography Services for Women with Disabilities: webinar June 24

Webinar: Creating Accessible Mammography Services June 24, from 1:00 – 2:30 (CT), the Illinois Disability and Health Program is hosting a training Webinar titled, “Creating Accessible Mammography Services for Women with Disabilities." Registration  is here:  www.adaconferences.org/Health/Register   For more information: Mammography Webinar Flyer

Social Security Releases New Instructions for Benefits Claims Based on Same-Sex Marriages

Friday, June 20, 2014
For Immediate Release

News ReleaseSOCIAL SECURITY

Social Security Defines Policy for Same-Sex Married Couples

Agency Extends Benefits Broadly, Subject to Legal Constraints

Social Security has published new instructions that allow the agency to process more claims in which entitlement or eligibility is affected by a same-sex relationship. These instructions come in response to last year’s Supreme Court decision in U.S. vs. Windsor, which found Section 3 of the Defense of Marriage Act unconstitutional.  

This latest policy development lets the agency recognize some non-marital legal relationships as marriages for determining entitlement to benefits. These instructions also allow Social Security to begin processing many claims in states that do not recognize same-sex marriages or non-marital legal relationships.  We have consulted with the Department of Justice and determined that the Social Security Act requires the agency to follow state law in Social Security cases. The new policy also addresses Supplemental Security Income claims based on same-sex relationships.

“As with previous same-sex marriage policies, we worked closely with the Department of Justice,” said Carolyn W. Colvin, Acting Commissioner of Social Security. “We are bound by the law within the Social Security Act, and we have to respect state laws.  We remain committed to treating all Americans fairly, with dignity, and respect.”

If a person believes he or she may be entitled to or eligible for benefits, they are encouraged to apply now.

To learn more, please visit www.socialsecurity.gov/same-sexcouples.

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The goal for 'Sonar Sticks' use ultrasound to guide blind people

By Meera Senthilingam, for CNN | June 20, 2014

(CNN) -- "On the streets the sidewalks are cluttered with street vendors, animals, streetlights and other obstacles which make them uncomfortable even for sighted people," explains Professor Meenakshi Balakrishnan, a computer engineer at the Indian Institute of Technology, in Delhi.

Balakrishnan heads the team behind the "Smartcane," a new device using ultrasound to guide the visually impaired through the busy streets of India by building upon the widely used white cane.

"A white cane is an excellent device, providing a lot of information to users," he says. "But it is poor at detecting obstacles that are above waist height and do not have a touch-point on the ground, such as a tree branches sticking out into your path."

On the streets the sidewalks are cluttered with street vendors, animals, streetlights and other obstacles
Professor M. Balakrishnan, Indian Institute of Technology

The team at Smartcane took on this challenge by copying the skills of animals such as bats, which emit sonar calls into their surroundings and use the echoes bouncing back from nearby objects to divert around them. The smart technology version instead sends out ultrasound waves via a device attached to a standard white cane; it detects them on their return, and uses vibrations to inform users of any obstacles in their way.

The real benefit comes from the ultrasound scanning a 45 degree span above the knee, providing information a regular cane simply can't provide. As people move the cane from left to right when they walk, vibrations detected on one side mean they should move towards the other.

Differing patterns and intensities of vibration tell users the distance of the object obstructing their path, as far as three meters away.

Smart and low cost

The Smartcane is not the first of its kind, with similar technologies existing in countries including South Korea, Taiwan and the United Kingdom, where the "Ultracane" has been available since 2011.

"Ultracane provides narrow-beam accurate navigation that allows a skilled user to proceed at normal walking speed. It helps you to 'navigate your way' rather than simply 'avoid hitting things.'" explains Dr Paul Clarke, director of Sound Foresight Technology Limited whose Ultracane device provides information on the direction, as well as distance, of an obstacle when aiding the mobility of its thousands of users worldwide. But a retail price of over $1,000 places it firmly out of reach of many in developing countries.

The aim of the Ultracane is to offer blind and visually impaired communities a device that gives them independent personal mobility outside the home," he says. The company has recently unveiled an "Ultrabike," a device that fits onto bikes and uses vibration to provide greater freedom on supervised cycle tracks. "Under controlled and supervised conditions the Ultrabike gives blind and visually impaired people an opportunity to experience -- or re-experience -- riding a bike," says Clarke.

The goal for Balakrishnan and his team, however, had been a low-cost technology to provide independence to the 15 million people estimated to be blind in India, where blindness is a national health priority.

"We are targeting low-cost economies, starting with India," states Balakrishnan. "In high-income countries, footpaths are wider and fairly safe with few obstacles, but in India there are many obstructions meaning people who are visually impaired are reluctant to leave their homes."

There are 5 million people estimated to be blind who are of productive age
Professor M. Balakrishnan, Indian Institute of Technology

Retailing at 3,000 Indian rupees, which is just $50, the Smartcane recently completed trials with 150 users from across the country and is now available to buy. The challenge remaining is to find and reach the millions of visually impaired Indians, many of whom reside in the poorest and most remote communities.

"There are 5 million people estimated to be blind who are of productive age and need independent mobility to work or go to school and be part of the mainstream," concludes Balakrishnan. "We are working through schools, hospitals and local NGOs, who are the groups with access to the people we 

need to reach."

With a goal of at least 50 partners, including government institutions and local NGOs, the aim is to bring independence to all the visually impaired people not only in India, but eventually beyond the country to benefit other low-income populations.

http://www.cnn.com/2014/06/20/tech/innovation/sonar-sticks-use-ultrasound-blind/

Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid: 15 Years After the Supreme Court’s Olmstead Decision

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Jun 18, 2014 | MaryBeth Musumeci and Henry Claypool

Kaiser Family Foundation  http://kff.org/

Executive Summary

June 2014 marks the 15th anniversary of the United States Supreme Court’s landmark civil rights decision in Olmstead v. L.C., finding that the unjustified institutionalization of people with disabilities is illegal discrimination.  While many cases are resolved without involving the courts, during the last 15 years, the lower courts have had the opportunity to apply Olmstead in a number of contexts, resulting in decisions furthering community integration for people with disabilities.   This issue brief examines the legacy of Olmstead, with an emphasis on legal case developments and policy trends emerging in the last five years and the related contributions of the Medicaid program. Medicaid is important because of its unique role in financing the home and community-based services (HCBS) that enable individuals in institutions to return to the community and those at risk of institutionalization to remain in the community with support.

Themes emerging from recent Olmstead cases highlight Medicaid’s role in

• providing community-based services instead of institutionalization;
• providing services in the most integrated setting to enable people with disabilities to interact with non-disabled peers to the fullest extent possible;
• providing community-based services to prevent institutionalization for people at risk;
• replacing sheltered workshops with supported employment; and
• eliminating disability-based discrimination within the Medicaid program.

States continue to make significant progress in reducing the amount spent on institutional services relative to HCBS, with Medicaid continuing to offer the means to facilitate solutions that implement the Americans with Disabilities Act’s (ADA) integration mandate.  This brief is not a review of state progress, but rather an examination of the role of the Court’s Olmstead decision and its subsequent legal enforcement in providing a vehicle for people with disabilities to gain access to services to enable them to live in the community.  The on-going work of states, together with the U.S. Department of Justice, the Centers for Medicare and Medicaid Services, people with disabilities, and others, along with the important support offered by the Medicaid program can continue to strengthen the ADA’s promise of community integration for people with disabilities.

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ISSUE BRIEF

http://kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under-medicaid-15-years-after-the-supreme-courts-olmstead-decision/

Lessons from the Mental Hospital: Glennon Doyle Melton at TEDx Talks

Everything I Needed to Know I Learned in a Mental Hospital by Glennon Doyle Melton for TEDxTraverseCity In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events...

An amazing talk that took so much courage and vulnerability to give. We all struggle with connection and compassion. We all struggle to find belonging and a sense of peace. Sometimes those struggles are to weighty. Glennon Doyle Melton, a recovering “number” (she used alcohol, food, and drugs to numb her pain) talks about her journey from cape-laden pretender to fully present human being. This talk is heartwarming and encouraging. Enjoy!

For much more of TEDx TALKS, please visit: http://tedxtalks.ted.com/

Illinois Medicaid program Digital woes hamper Alexian Brothers Health System launch date

Kristen Schorsch | Crain's Chicago | June 17, 2014

Alexian Brothers Health System is suspending its effort to launch a Medicaid program, blaming the difficulty of connecting physicians using different electronic records systems.

The Arlington Heights-based health system was spearheading a so-called accountable care entity to coordinate the care of about 46,000 patients on Medicaid, the state-federal health insurance program for the poor and disabled. The ACEs are a form of managed care, one of Gov. Pat Quinn's initiatives to focus on preventative treatment to keep patients healthy and reduce health care costs.

Alexian planned to have several partners in its ACE network, including nonprofit community clinics and independent physicians. Getting every physician's electronic health record system to share information within the state's required timeframe was too challenging, said Don Franke, Alexian vice president of clinical integration. He estimated that about 80 percent of physicians in the network are on about 10 digital medical records systems, and the network isn't even fully formed yet.

“We don't want to be a distraction from (the state's) efforts,” Mr. Franke said. “We're going to continue to work on getting our processes in order so that when the second wave comes, we can be a participant in that.”

When asked about the impact of Alexian not immediately leading its own ACE, a spokeswoman for the Illinois Department of Healthcare and Family Services, which oversees Medicaid, said, “They haven't shut the door, so we are hopeful that they will pursue (an ACE) in the future.”

State officials have said they expected several potential ACEs to team up instead of going it alone.

TROUBLE MEETING REQUIREMENTS

Alexian's decision comes as the state delays the rollout of managed care, which was slated to begin on July 1 but will be pushed back in some parts of the state to August and possibly September.

Half of the state's 2.9 million Medicaid recipients must be enrolled in some form of managed care by 2015 under a Medicaid overhaul backed by Mr. Quinn. The idea is to transform how physicians and hospitals provide and are paid for care by focusing on quality rather than paying them for every service they provide, which can entice providers to perform unnecessary services.

Alexian, which has five hospitals, was one of nine ACEs, eight of which were based in the Chicago area. Other ACEs have been developed by Chicago-based Presence Health, the largest Catholic hospital system in Illinois, and by Advocate Physician Partners, which is jointly governed by Downers Grove-based Advocate Health Care, the largest hospital network in the state, and more than 4,400 employed and independent physicians.

Alexian was part of a small group of health systems that failed to make the state's initial cut earlier this year but were approved within the past few months.

But as the health system was preparing for a July 1 launch date, Mr. Franke said it was clear its ACE could not meet certain requirements. For example, 60 percent of the network would have to be connected in some way to the Illinois Health Information Exchange within 15 months, with 100 percent participation in 30 months, Mr. Franke said. Known as ILHIE, the state initiative aims to electronically connect the 38,000 physicians and roughly 200 hospitals across the state.

Within 15 months, 70 percent of the network would have to electronically file summaries of care they provided to patients after an ER visit, for example, either through the state's health information exchange or by having everyone on the same digital records system.

'HARD TO TRACK QUALITY'

Crain's in April documented the trepidation among physicians to insert electronics into the exam room. Doctors voiced concern about the awkward conversations with patients while typing away on a computer.

But with physicians and hospitals being held financially accountable for the care they provide and mandates from the federal government to implement an electronic record by 2015, more health care systems are trying to close the loop on gaps in care.

A focus of the ACE program is establishing and monitoring quality goals to improve the care they provide to patients.

“It's hard to track quality if you've got a very diverse, independent number of partners,” said Andy Smith, president of Impact Advisors LLC, a Naperville-based health care consultancy.

Alexian plans to partner with other health care organizations that have formed ACEs, such asLoyola University Health System.

In a statement, a spokeswoman for the Maywood-based hospital system said, “Loyola University Medical Center and Alexian Brothers Health System have had clinical service affiliations including neonatology, pediatric oncology and pediatric cardiology for many years. We continue to look for opportunities to partner with Alexian to further the ministry of Catholic health care in service to our communities.”

http://www.chicagobusiness.com/article/20140617/NEWS03/140619849/digital-woes-hamper-alexian-brothers-shift-to-new-medicaid-program?utm_source=NEWS03&utm_medium=rss&utm_campaign=chicagobusiness

Illinois Shows Improvement In Serving Older, Disabled Residents; BUT...

PRESS RELEASE -- SPRINGFIELD, Ill., June 19, 2014--(PR Newswire)

In spite of significant improvements, more needs to be done

Illinois' rank as 15th across the nation when it comes to meeting the long-term care needs of older residents shows significant improvement. However, AARP warns more must be done to protect the rights of older individuals living in the state. This, according to a new, comprehensive state-by-state Scorecard from AARP with support of the nation's leading organizations behind quality long-term care, The Commonwealth Fund and SCAN Foundation.

Raising Expectations 2014: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers – an update of the inaugural 2011 Scorecard – ranks each state overall and within 26 performance indicators along five key dimensions: affordability and access; choice of setting and provider; quality of life and quality of care; support for family caregivers; and, effective transitions. New indicators this year include length of stay in nursing homes and use of anti-psychotic drugs by nursing homes, raising serious concerns about the quality of institutional care.

"The vast majority of older Illinoisans want to live independently, at home, as they age – most with the help of unpaid family caregivers," says Bob Gallo, state director of AARP Illinois, which serves 1.7 million members age 50 and older in Illinois. "Although progress has been made to protect older residents, this Scorecard shows we have more to do – and we don't have time to stand idle."

Today, unpaid family caregivers provide the bulk of care for older Illinoisans, in part because the cost of long-term care remains unaffordable for most middle income families. In Illinois, more than 2.4 million residents help their aging parents, spouses and other loved ones stay at home by providing assistance with bathing and dressing, transportation, finances, complex medical tasks like wound care and injections, and more. The value of this unpaid care totals about $18 billion.

"When it comes to helping older Illinoisans live in the setting of their choice, this silent army of family caregivers assumes the lion's share of responsibility," explains Gallo. "Many juggle full-time jobs with their caregiving duties; others provide 24/7 care for their loved ones. They do this with little support or acknowledgment. This is why AARP Illinois has pursued policy to give caregivers assistance and training to support their loved ones when they are discharged from hospitals."

AARP Illinois strongly supports Senate Bill 3304, sponsored by Sen. Chapin Rose. The legislation gives training to caregivers when their loved ones are discharged from hospitals.
According to the state Scorecard, if Illinois improved its performance to the level of the highest-performing state:

• 59,317 more low- or moderate-income (<250 21="" activity="" adults="" age="" be="" by="" covered="" daily="" disabilities="" li="" living="" medicaid.="" of="" poverty="" with="" would="">
• 5,593 more new users of Medicaid LTSS would first receive services in home and community based settings instead of nursing homes.
• 19,067 nursing home residents with low care needs would instead be able to receive LTSS in the community.
• 4,090 more people entering nursing homes would be able to return to the community within 100 days
• 4,796 more people who have been in a nursing home for 90 days or more would be able to move back to the community.

The single strongest predictor of a state's long-term care system is the reach of its Medicaid long-term care safety net. That's why AARP also fought to expand services provided at home and in the community, by shifting funds away from undesirable, low quality, and more expensive nursing home care.

Of the 26 Scorecard indicators, 13 may be improved through state policy changes, pointing to the importance of AARP's multi-state advocacy campaign, launched this year, to help older Americans live independently, at home, and the family caregivers that support them. Currently, 42 states are advocating as part of the campaign, including Illinois.

Long-term care (also called long-term services and supports) is a diverse set of services designed to help older people and those with disabilities; services can be provided in a person's home, in a community setting such as an adult day center, or in a group residential facility like a nursing home.

The full state Scorecard, along with an interactive map of state rankings and information, is available at www.longtermscorecard.org.

PDF - http://origin-qps.onstreammedia.com/origin/multivu_archive/ENR/FX-DC52937-20140619.pdf

SOURCE AARP Illinois