Rose’s Story

The definition of disability varies often based on the purpose of the data obtained and the mechanism used for data collection. For example, the National Center for Health Statistics uses the National Health Interview Survey, an extensive face-to-face survey of 32 questions used to determine a person’s disability. In contrast, in the Behavioral Risk Factor Surveillance System, disability is determined by answering yes to one of two questions related to limitations in any activity related to physical, mental, or emotional problems, or use of assistive equipment like a cane or special bed. Healthy People 2020 is attempting to tackle this definitional inconsistency by including a standard set of disability questions in all data systems used.

A National Issue
In January 2011, the Centers for Disease Control & Prevention (CDC) released their Health Disparities and Inequalities Report. Disability status was used for the first time as a measure by the CDC in the 2011 report, recognizing that disability is a source of health care disparities. According to this report, disability includes impairments or limitations in activities or social participation as a result of an interaction between a person’s environment and his or her health condition.

The CDC report finds that persons with disabilities have greater disparity in health and socio-economic status including high school competition rates, living below the federal poverty level, and higher rates of chronic health conditions.

Health Status
According to the CDC Health Disparities and Inequalities Report, released in Jan 2011, persons with disabilities are more likely than the general population to have health insurance, 17.7% vs. 20.5%.  But in spite of better coverage and more expense, they are less healthy than the general population. For example, 14.9% of those with disabilities have diabetes, vs. 4.5% of the rest of the population; 57.3% of those with disabilities have hypertension, vs. 28.6% of the rest of the population. It is estimated that individuals with multiple chronic conditions cost up to 7 times as much as patients with only one chronic condition.  Health care for persons with disabilities is particularly expensive, because of the existence of multiple health conditions.  According to a report by the National Institute for Health Care Management in July, 2011, health care spending is distributed very unevenly, with 50% of the population at the low end of the cost scale accounting for 3% of the national health care spending, and 5% of the population responsible for almost 50% of the spending.

Housing
Unhealthy housing is another area of disparity for persons with disabilities. According to the 2011 CDC Health Disparities and Inequalities Report, 27% of persons with disabilities lived in unhealthy housing in 2007, increasing to 30.2% in 2009, while those able-bodied noticed a decline from 23.7% to 23.2% over the same period. Unhealthy housing characteristics (in addition to inadequate housing) consist of peeling paint, presence of rodents, recent leaks and no working smoke alarm.

Employment
Employment and household income for those with disabilities continues to lag behind those without a disability. According to the 2009 Cornell Rehabilitation Research and Training Centeron Employment Policy for Persons with Disabilities Progress Report, the employment rate among persons with disabilities was 36% and 76.8% for those without a disability. According to the same report, the median household income of working age people with disabilities in 2008 was $32,161 and $60,946 for those without disabilities.

On Dec. 14, 2007, Mr. Woo was paralyzed after an accident at a construction site at Goldman Sachs headquarters on West Street. Mr. Woo, an architect on the project, was struck as seven tons of metal studs, hoisted by a crane, crushed the trailer in which he was working.

The video above shows Mr. Woo has been testing a bionic exoskeleton called Ekso, designed to allow patients in wheelchairs to stand and move while upright. The device is not available for home use, though its manufacturer, Ekso Bionics, expects that it will be by 2013.

The Ekso gear allows for a more rhythmic gait, he explained, though little can prepare first-timers for the initial jolt in their lower body. “It feels like someone’s grabbing you, lunging your legs forward,” said Mr. Cooke, with whom Mr. Woo has developed a friendly competition during their rehabilitation.

As his session neared its end on Thursday, Mr. Woo began to move more quickly. Darrell Musick, clinical director at Ekso Bionics, encouraged him to complete a final “lap,” to a piece of black tape on the floor across the room, and back again. Mr. Woo strode confidently, eyes glued to the wall in front of him, as another therapist trailed him, manning the controls. When he finished, Mr. Woo looked up at Mr. Musick, pleading silently. “All right,” Mr. Musick said. “One more.”

Though Mr. Woo said Thursday that he hoped to buy the device if it reached the market, his attention remained fixed on what he had accomplished during the session. He had walked for 11 minutes, across Mount Sinai’s speckled beige floors. He took 300 steps. He remained standing for a total of 25 minutes.

(Source: New York Times)

With the constant doom and gloom predictions of the state’s financial status, it was with some surprise that Minnesota‘s economists forecast a budget surplus of $876 million for the rest of the two-year spending cycle.

How did this come to pass? The 2011 fiscal year closed with revenues $358 million higher than expected and expenditures $205 million below previous forecasts. With projected revenues for the 2012-13 biennium expected to be relatively unchanged and projected expenditures anticipated to be $348 million less, this will yield a projected $876 million positive balance. Much of the expenditure reductions are from changes made in the area of Health and Human Services, particularly enrollment and cost trends in the state’s Medical Assistance programs. This means the state’s public health programs won’t enroll as many people, and therefore won’t cost as much as previously anticipated.

This news comes after a four-year string of budget deficits in Minnesota. It was back in February 2007 that economists announced a projected surplus of around $1 billion — the last time the state was in the black. Since then, a sequence of shortfalls has drained reserves, forced reductions to almost every state service and caused elected leaders to borrow billions from public schools and private lenders.

Long-standing state statute is triggered by this surplus, which will direct the balance to the state’s cash flow account ($255 million) and the budget reserve ($621 million). If the surplus had proved larger, current statutes would have directed the additional dollars to buy-back the K-12 education shift. Despite these laws, we could still see a fight between the GOP legislature and DFL governor over how and whether to spend the surplus.

Overall, the state’s economy has improved in recent years and is slightly outperforming the national economy. However, such positives are still offset by the tumultuous financial environment, including the debt crisis in Europe and US deficit reduction plans. Minnesota Management and Budget Commissioner, Jim Schowalter commented: “This is obviously good news and a helpful break from recurring budget gaps. It’s also a reminder that Minnesota still has some significant strengths – above average economic performance and the discipline to quickly stabilize its finances. Future risk remains, but at least we now have a cushion.”

We will really know the outlook when the February forecast is released next year. It is this next forecast that is used for budgeting and it will also include the total tax receipts from the busy holiday period. Until then, the news for now is at least getting better, which can only bode well for Minnesota and for Minnesotans with disabilities.

1897 –Minnesota set aside funds for the nation’s first state-sponsored hospital for crippled children, which is now Gillette Children’s Hospital.

1919 – Congress enacted the Smith-Sears Vocational Rehabilitation Act, which made the government responsible for educating and training disabled veterans.

1920 – Citizens benefited from the extension of the Smith-Sears Vocational Rehabilitation Act, and to meet the needs of Minnesotans the Minnesota Department of Re-education was founded.

1925 – The formation and first meeting of the Minnesota Conference for the Disabled, which soon changes its name to the Minnesota Association for Crippled Children.

1928 - Minnesota Association for Crippled Children incorporated (April 10).

1931 – Minnesota Governor Floyd B. Olson signs bill providing school transportation for rural disabled children, an early victory of the lobbying efforts of the association members.

1933 – The Minnesota Association for Crippled Children becomes an affiliate of the National Society for Crippled Children and Adults.

1935 – A bill supported by association members passed benefiting rural children by providing board and care, enabling them to attend schools offering special classes in nearby districts.

1935 – President Franklin D. Roosevelt signed the Social Security Act, which changed the rehabilitation scene and was the first recognition by the federal government that assisting disabled persons is social justice rather than charity.

1936 - Name changes to Minnesota Association for Crippled Children and Disabled Adults

1943 – Congress passes the LaFollete-Barden Act amending the Vocational Rehabilitation Act by providing federal funding for physical rehabilitation.

1947 - Corporate name changes to Minnesota Society for Crippled Children and Adults, Inc. (MiSCCA).  President’s Committee on the Employment of Persons with Disabilities is established.

1950 – Federal-state programs established as part of the Social Security Amendments to aid disabled persons.

1953 – The Minnesota Council for Special Education is organized; Wilko B. Schoenbohm is its first president.  The group was successful in both fundraising and campaigning for the needs of the education needs of handicapped children.

1954 – Congress passes the Vocational Rehabilitation Amendments providing federal grants for expanded programs serving people with physical disabilities.

1958 - First Architectural Barriers Committee established by the Society.

1961 – The U.S. Office of Vocational Rehabilitation awards the Society a grant for the nation’s first survey of architectural barriers.

1963 - Courage Foundation is established; Barrier Project, led by MiSCCA, result in Minnesota leading the nation in codifying statewide physical access; President Kennedy calls for deinstitutionalization of disabled persons and increased community services.

1966 - The Society begins research to develop the concept of a residential rehabilitation center, with a special fund started with a stock gift from Malcolm and Gray Mackay as an incentive for the development of such a center.

1967 – The first four-year college in the nation without barriers opens, Southwest State University in Marshall, which the Society aided in planning.

1973 - Courage Center dedicated (April 27) by Julie Nixon Eisenhower; Federal government enacts Section 504 of the Rehabilitation Act, prohibiting discrimination against individuals with disabilities; Minnesota State Council on Disability founded.

1975 – The United Nations General Assembly adopts the Declaration on the Rights of Disabled Persons reflecting a changing perspective on disability rights; the American Coalition of Citizens with Disabilities is founded.

1977 – The White House Conference on Handicapped Individuals.

1978 – National Institute of Handicapped Research (later the National Institute on Disability and Rehabilitation Research) begins operation.

1981 – International Year of Disabled Persons. Its theme was “full participation and equality.”

1984 – Social Security Disability Benefits Reform Act seeks to restore the Social Security Disability programs after the 1980 legislation calling for continuing reviews of disability cases, which led to the termination of many person’s disability insurance.

1990 – American with Disabilities Act, a civil rights law, seeks to assure equality of opportunity for people with disabilities.

1992 – The employment provisions of the ADA go into effect.

1995 – Disability Rights Section created in the U.S. Department of Justice.

1998 - Courage Center and Sister Kenny Institute create AXIS Healthcare, a new health care model for people with disabilities; new Courage branding, logo and tagline developed.

1999 – Minnesota Consortium for Citizens with Disabilities proposed and passed the Medical Assistance for Employed Persons with Disabilities Program.  Work Incentives Improvement Act provided tax credit for work related disability expenses.

2003 - Courage celebrates 75 years; receive Federal government’s New Freedom Initiative Award for innovative vocational and assistive technology programs.

2004 - Multi-year, $17 million Capital Campaign completed at Courage Center.

2005 – Minnesotans with Disabilities Act passes through the legislature.

2006 – The United Nations General Assembly adopts the Convention on the Rights of Disabled Persons on December 13.

2008 - Courage Center celebrates 80th anniversary; Courage Center St. Croix turns 20.

2010 – 20 year anniversary of the landmark Americans with Disability Act

Helping People with Paralysis from Spinal Cord Injury and Neurological Conditions Achieve Greater Health, Fitness, Strength and Independence

ABLE is Courage Center’s Activity-Based Locomotor Exercise program, an innovative new approach for people living with paralysis or neurological conditions. It uses emerging research about the benefits of activating muscles and nerves to promote a greater degree of neuro recovery. Most participants experience improvements in:

• Overall health
• Fitness
• Strength
• Quality of life

The ABLE Program’s non-traditional approach utilizes revolutionary locomotor training, Functional Electrical Stimulation (FES), the Giger MD therapy device and guided fitness activities to maximize recovery by challenging muscles below the level of injury.

JOE DETRINGER

“I think some of my confidence in skiing carries over into life in general,” said Joe Dertinger. “It helps me think, ‘If I can do this, I can do anything.’” Impressive introspection from one so young.  At 14, Joe exemplifies that wonderful kaleidoscope of qualities that defines youthful adolescence – everything from spontaneous action to spot-on self awareness. He is the sum of his parts, and his parts include a supportive twin sister and parents, a family culture of volunteerism, a penchant for skiing and love of rugged sports, and a prosthetic leg.

“When Joe was 15 months old, he had surgery at Shriner’s Hospital for Children to remove a small foot on his right leg and to separate two fingers that were webbed together,” explained his mom, Sue Dertinger.  Two months later, he received his first prosthetic leg.  When Joe figured out what he could do wearing the leg, he just took off and hasn’t slowed down yet.”

When Joe and his twin sister, Johanna, were in first grade, Joe’s prosthetist at Shriner’s mentioned Courage Center’s ski program. “He and his wife had been volunteers with the program for years,” said Sue. “We checked into it, loved it, and have been involved ever since.” “I’ve been in the racing program the last four years, and it’s loads of fun!” said Joe. “It’s something you can always get better at. For example, I recently started doing a tuck at the end of the run to get faster times.” Joe doesn’t use adaptive ski equipment. “Just regular skis and poles,” he said.

Competitive by nature? Oh, yeah. “I always want to be the best at whatever I do,” Joe said. “Like in kickball in gym class. I always wanted to kick the ball further than the more athletic kids. I kick better with my prosthetic leg, so I’d kick as hard as I could, and almost every time my leg would fly half way across the gym!” Sports and volunteering go hand in hand for the Dertinger family. Dad, Mike, explained. “When the twins signed up for t-ball with the Community Education Program in Waconia, I learned the program needed coaches. Once I started, I loved it. Since then, I’ve been coaching the kids in softball, baseball and volleyball – in summer, sometimes four nights a week.”

Mike and Joe have been involved with the Courage Center Ski & Snow Board program for eight years, and the racing program for four.  Mike is also a 21-year member of the Waconia Fire Department. Equally involved in skiing is Joe’s twin sister, Johanna. “My dad’s volunteering with Courage Center looked fun to me, so I asked when I could start doing that. I became a ski-buddy volunteer four years ago when I was 10.” A ski-buddy volunteer helps skiers with disabilities experience the joys of skiing by assisting them before, after, and on the slopes. Johanna volunteers because she believes that all people, whether they have a disability or not, should be able to do what they enjoy.  “Just seeing the smiles on their faces after every ski run makes all the training we volunteers do worth the effort,” Johanna said. “All the volunteers know they did their jobs every time they see those smiles.”

As for the future, Joe has his sights set on college in Colorado (where the skiing is great), and hopes to design parts for prosthetics. “Even now I have an idea for a new kind of prosthetic part,” he said. “People tell me, ‘You should design parts because you know what works and how a prosthetic leg feels better than any of us.’ I’ve broken parts in nearly every device I’ve had – even the ones that were supposed to be unbreakable – so my goal is to invent, as my mom puts it, ‘a Joey-proof leg.’”

It won’t be soon enough: Joe’s additional sports endeavors include football and BMX (which stands for bicycle motocross) racing, an extremely physical sport pitting contenders against each other and the clock on dirt tracks with dangerous twists, turns and jumps. Yet, his first love is skiing. “All the people you meet and places you go – that’s the best part of skiing with Courage Center,” he said. “I have met the nicest people on ski hills – and even some off the hill. I’m hoping to go to the Paralympics some day. That, to me, would be living the dream.”

“Joe has developed a self confidence that I never expected,” said his dad. “He always loved to ski, but watching him develop his racing skills has encouraged him to become more outgoing, self assured and focused. He’s my hero.” “I’m grateful for the self-confidence, courage and understanding that Joe and Johanna have learned by being involved with Courage Center,” said their mom, who willingly volunteers her formidable organizing and chauffeuring skills to keep her busy family on track. “I’m proud of them as they learn about life and helping others.  As I’ve always told them, ‘You can do whatever you want to do.’”

What is Courage Center’s Zeitgeist?  

Zeitgeist means “the spirit of the times” or “the spirit of the age.” Moreover, Zeitgeist is the general cultural, intellectual, ethical, spiritual, and/or political climate within a nation or even specific groups, along with the general ambience, morals, sociocultural direction, and mood associated with an era.

So what does all that mean?  

Simply put, the Courage Center Zeitgeist is a bite-sized breakdown of the week’s news – highlights on policy, health care, and the disability world. It could be the latest news development on health care reform, a blog about how technology is helping to breakdown barriers to independence, or even a tweet about a breaking story at the Capitol. We also throw in stories that show the incredible achievements of people with disabilities around the world.

Here is a sample of what you will get:

2011 Award Winner – Bangsberg embodies spirit of service, Access Press

Healthcare rivals’ partnership improves patient satisfaction, lowers costs, MPR

Budget Cuts Erase a Daily Lifeline for the Elderly and Disabled, New York Times

Support for Health Care Law at New Low, Yahoo News

Medicare 2012 premium hike smaller than feared, Yahoo News

Dayton’s loan plan draws skepticism, interest, MPR

Bipartisan Accord in Connecticut Yields a $626M Jobs Package with Provisions for People with Disabilities, New York Times

Dr. Gridlock : Metro’s service for disabled riders gets feedback, Washington Post

If you like what you read, and would like to receive a small daily dose of disability and health care related news, just send an email to: christian.knights@couragecenter.org with ‘Zeitgeist Sign Up‘ in the subject line.

Of course we hope you will continue to use our other tools of the trade for your public policy and advocacy needs. We have our public affairs and research blog (we are just 1,500 views away from 40,000 views all time in just over two years- help us get more!) Or if you like you news and updates in bite sized 140 character format, you can follow us on Twitter. We have a little way to go to catch Lady Gaga and Justin Bieber with their 14m and 13m followers, but it’s the destination of choice for the latest scoops and fresh info about those late night developments at the State Capitol.

CHRIS ANDERSON

Chris Anderson, 40, has been a health care puzzle all his life. But thanks to a correct diagnosis – finally! – and coordinated health care from Courage Center’s Physicians’ Clinic, the puzzle pieces are falling into place and revealing a picture of purpose.

Born in 1970, Anderson was premature and, in a word, complicated. “I was actually pronounced dead, then revived,” he said. “I had a soft pallet that caused feeding and, later, speech difficulties. As a kid, I was forever getting sick with colds, sinus infections and unexplained pains.”

In spite of his poor health, he became a Catholic retreat leader and youth minister in his 20s and worked in New York with at-risk youth.

At 33 and back in Minnesota, Anderson experienced heart failure. “That’s when the attending doctor noticed my many, many symptoms and identified their root cause. He tested me for DiGeorge syndrome, a condition resulting from a deletion of part of the human chromosome 22. Sure enough, I have that congenital condition.”

About two years ago, Anderson’s mental health symptoms became more pronounced. They included agoraphobia, anxiety attacks, and post traumatic stress syndrome from his physical illnesses and the struggles of growing up with speech impairments and learning difficulties. Getting out in the world became overwhelming. Anderson sought help from Courage Center’s Adult Rehabilitative Mental Health Services (ARMHS).

“John White, my ARMHS counselor, suggested we coordinate my mental health care with my physical care by making Courage Center’s Physicians’ Clinic my primary care provider. That way, all my counselors and physicians would be on the same page, and I would be treated as a whole individual instead of as an amalgam of many separate parts.”

The change was remarkable.

“I’m so pleased to have all my mental and physical health care under one roof,”Anderson said. “It’s far less confusing and way more convenient for me. And it cuts down on my anxiety of coordinating appointments and driving, which for some people with mental illness issues, is significant. Coordinated appointments are a blessing.”

Anderson also believes that the quality of his care is improved. “Everyone here is very knowledgeable, not to mention personable. They are professional and excellent resources for finding answers to difficult health questions. And, because they are all working as a team to help me, I feel I’m getting the best care possible. I feel welcome, connected and useful. And I truly appreciate their humanity.”

While DiGeorge syndrome is not curable, its symptoms are now being better managed. His medications are coordinated to deliver maximum benefits without incurring side affects to his

complex issues. And he now feels well enough to be an active participant in his health care.

Equally important, he’s getting out more. “Courage Center asked me to be on the Physicians’ Clinic board of advisors,” he said. “I like technology and I’ve done a bit of web design for friends and non-profits that I care about. I’ve offered some helpful hints to make the Courage Center website more accessible to people with disabilities. I’m proud of that.”

He’s also proud of contributing his talents to exploring the idea of using Skype-like video technology as a tool to help physicians and their patients communicate more easily. “This could be tremendously beneficial, especially for homebound patients,” he explained. “Imagine showing your doctor your healing wound or improved range of motion while you sit in your living room and he or she remains in the clinic. And mental health counseling? It would definitely provide a huge convenience.”

Additionally, Anderson accompanied Courage Center advocates to the Minnesota State Capitol to talk about health care needs. “I’m fascinated with politics and would love to make a difference for people with disabilities. There are only two ways to know about these things: by having a disability or by living or working with people who do. I’m in a good position to help.”

Public advocacy on behalf of people with disabilities is definitely onAnderson’s to-do list. So is writing his book. “Given that most babies born with DiGeorge syndrome seldom live beyond 5 years of age, I’m one of the lucky ones,” he said. “There has to be a reason I’m still here. I’ve got work to do.”

Over 50 people attended, including five elected officials from the local districts –  Senators Ray Vandeveer (52) and Ted Lillie (56) and Representatives Bob Dettmer (52A), Kathy Lohmer (56A), and Andrea Kieffer (56B).

In all, 12 people told their personal stories. Powerful stories were heard from parents concerning the PCA cuts and the challenges they have brought to their families. Janet Schantzen, who has a daughter with a disability, spoke passionately about the services her daughter receives. “Without help from our PCA, I don’t know if I would have the time to work my current job and care for my daughter.”

Rachel Swanson uses Courage St Croix for all her wellness and fitness and aquatics needs, and she has received rehabilitation therapies in the past. Using her Dynabox communication device, Rachel told legislators the importance of CDCS (Consumer Directed Consumer Supports) that keep her living in an independent setting, instead of a more costly nursing home. She also spoke of the importance of Courage St Croix in her life. “Courage Center is not just where I go to swim in the pool, it is a place that offers me a supporting environment to keep on track.”

Other compelling stories came from service providers trying to do the same work with less resources and worrying about the care of their clients, parents speaking of their children’s successes and challenges, and individuals speaking of the importance of key programs that help them stay independent.

The town hall forums will move on to Burnsville on Monday October 10, and then to Willmar, Saint Cloud, Duluth, and Worthington, before finishing in Rochester.

For more information on the ‘Disability Matters’ Town Hall Forums, you can visit Courage Center’s advocate section here.