Today’s the day the 86th session of the Minnesota State Legislature begins. There are many questions needed to be answered in 2010, not least of which is the $1.2 billion budget shortfall for the current biennium. It is unfortunate that Minnesota finds itself in a similar position to the 2009 legislative session in needing to make very difficult choices about what areas of the budget can be trimmed to cover the state budget deficit. Last year, the disability community was hit hard particularly with cuts to Medicaid rate, the PCA program and other heath and human service programs including the GAMC (General Assistance Medical Care), all made to balance the budget. “But this is a bonding year, not a budget year” I hear your cry. That is true, but where state government is concerned it can all get mighty complicated. So to try and help demystify the process, here is the Public Affairs and Research department’s jargon buster to it all.
Let’s start with the easy ones.
Biennium
This is the name for Minnesota’s two year legislative cycle. The first year is a budget year, where lawmakers set the state’s working budget for two years. In the second year, legislators work on the state bonding proposals, essentially taking care of any assets the state owns.
What about the current year?
Bonding Year
We are in the second year of the Minnesota legislative biennium (the even-numbered years: 2010, 2012, 20114), is where lawmakers decide which state priorities to fund. The state’s bonding could be considered like a ‘credit card’- it is how the state finances new improvements on projects that the state owns- trails, bridges, roads, higher education buildings, etc.). Lawmakers spend the majority of this session viewing state projects up for funding and then deciding where state bonds will be awarded. This can also be referred to as the “short session”. (Though recently years have certainly not lived up to that name!)
So that must mean next year is a…
Budget Year
The first year of the Minnesota legislative biennium (the odd-numbered years: 2009, 2011, 2013) is where lawmakers set the state’s working budget for two years. It is important to note that the Minnesota State Legislature has to have a balanced budget before adjourning for session; this was the reason for many of the budget cuts last year. Unlike the federal government, Minnesota cannot borrow money, and its constitution demands a balanced budget. This part of the biennium is referred to as the “long session”. (And boy it has lived up to its name!)
So if this is a bonding year, why the talk of deficits and budget cuts?
This is all about economics. Minnesota passes a working budget in the first year of the legislative biennium. This budget will last for the two years until the next budget year. However, a budget forecast is made in November and February each year. This forecast is used to guide Minnesota to a balanced budget. With the economic recession Minnesota and the world has been going through recently though, the projections made in February 2009 of how much revenue would be received by the state to balance the biennium budget were off. We did not receive the tax receipts we thought we would and thus this shortfall of revenue has left a $1.2 billion hole. This hole has to be plugged in this bonding year to fulfill the constitutional demand of a balanced budget.
So there it is, a brief look at the structure of Minnesota’s legislative session. Hopefully you have not glazed over reading it, or been turned off state politics. This is just the start, and we all have much work to do to protect programs and services vital to independence. Stay tuned for more legislative news over the next few months, and more importantly, find out the ways you can make a difference.
In our sample of already-exercising adults with disabilities, we saw a statistically significant decrease in injuries due to loss of sensation and circulatory problems (swelling of legs or feet and occurrence of blood clots). In addition, there was a trend toward a decrease in problems with weight control and regulation of eating. These changes after a relatively short time of exercising are important because they relate to short-term cost changes, but also to long-term effects on health.
Decrease in problems due to loss of sensation refers to a decrease in the occurrence of skin problems due to loss of sensation, such as skin breakdown, which can be very expensive to manage, with costs ranging from $2,000 to $30,000 per wound. The cost can go as high as $200,000 if surgical repair and hospitalization is necessary. We saw a decrease of 8% in moderate to severe problems in this area.
Decrease in circulatory problems relates to a decrease in both swelling in the legs and in the development of blood clots. We saw a decrease of 12% in moderate to severe problems in this area.
Decrease in problems related to weight control and regulating eating are important because obesity is a common secondary condition for individuals with disabilities, and is related to decreasing independence in transfers and self care and increased problems with blood pressure and diabetes. We saw a decrease of 15% in moderate to severe problems in this area.
Finally, we saw an overall trend toward a decrease in the severity of secondary conditions, and expect to see a larger change over time. Specifically, we saw a decrease in severity in arthritis, isolation, and problems with access.
This outcomes study of already-exercising adults with disabilities and complex health conditions demonstrates continued gains from regular exercise. The decrease in secondary conditions and in the severity of those secondary conditions translates to real improvements in health for these individuals. Support for fitness services for individuals with physical disabilities is an effective way to promote health and fitness in a population at risk.
As an organization, Courage Center provides many opportunities to be involved in lifetime sports such as hand cycling, downhill skiing, water-skiing, competitive team sports such as basketball, quad rugby, power soccer and softball, as well as creative activities such as crafts, painting and photography. What we have noticed though, is that it isn’t just the slew of titles, medals and achievements that are the positive outcomes from these activities. Staff and parents have witnessed on a regular basis the children who participate excel on many other levels including with social and educational skills, and not just physical. We want to analyze this impact, to better understanding of the impact of participation of youth with physical disabilities who are in a sports and recreation program.
Our research will see us examining the dynamics of these experiences through qualitative research by interviewing both youth and parents of those youth who actively participate in a form of sports related activity. While there is not large chucks of literature out there about this phenomenon, researchers investigating of sports and disability, called for an increased understanding and recognition of the importance of sport’s activity for persons with disabilities (Whilhite and Shank, 2009) Thus, Courage Center has an exciting opportunity to contribute to the awareness of experiences shared by the kids who on a regular basis transform disabilities into abilities.
Take a look at our interview with Ben, a Paralympic multi-sport athlete describing the powerful impact of participating in the Courage Center’s Sports and Recreation programs on his life, “It definitely makes you more confident. It makes you feel more equal because you are doing what other able bodied people are doing at the same level or even higher than they are doing it. It is a big self-esteem booster.”
Whilhite, B., & Shank, J. (2009). In praise of sport: Promoting sport participation as a mechanism of health among persons with a disability. Disability and Health Journal, 2, 116-117.
So 2009 was the year that was, and like any other year was filled with highs and lows. However, 2009 will undoubtedly be remembered for the economy and the return of recession. Another word that Minnesota and many other states came to fear was ‘deficit’. Minnesota saw large cuts to heath and human service programs including Medicaid rate cuts which hit Courage Center hard. Coupled with the downturn in the economy and philanthropic giving being down (philanthropy supports 25% of Courage Center’s programs and services) it was very much a financial tsunami.
Nevertheless, we continue to strive to deliver programs and services to people with barriers to health and emphasize independence. We had some great 2009 success stories too. Courage Center is fast becoming an academy of sporting excellence, producing world-class athletes, comparable to other renowned developers of talent like the Clairefontaine academy for soccer in France. 2009 saw a repeat national champion Varsity team (and a Wheaties Box) a second national championship for the colts team, multiple players go to college on full sporting scholarships, and also saw our power soccer team place 3rd at nationals with future success sure to come.
With 2009 complete, what will 2010 bring us? How will this decade begin for Courage Center and the disability community?
In true countdown fashion and in no discernible order here are some things to look out for in 2010.
Health Care Home
There is a huge need for primary care that is informed by knowledge of disability. Many clients are not able to get primary care, because their conditions are so complex that they cannot be managed in an 8 minute visit with a primary care provider. Because of this, many of our clients use specialists for all of their care. This creates care that is disjointed, with gaps and overlaps. Courage Center, with the help of 2 $200,000 grants from the Minnesota Department of Human Services, is launching a Primary Care Clinic that will be a medical home for individuals with disabilities and complex health conditions. Our goal with this clinic is to coordinate quality health care for our clients and create improved quality of health and life, and document savings through our efforts. We want to create a model that can be replicated elsewhere to provide excellent care for our clients.
Communicate at the Capitol
One of the cornerstones of our advocacy efforts at the State Legislature is Courage Center’s annual Day at the Capitol. We meet in the morning, bring in some legislators and special guests, feed you, and transport you over to the Capitol to meet with your legislator and tell your powerful stories. It is not just a fun and empowering day, but also really helps us get the message of Courage Center and disability community across to legislators. It will again be of great importance this year, and the threat of cuts again looms overhead.
Census
What is the census and why is it important? Well, not only is the census mandatory, but accurate reporting is essential. In fact, the information the census collects helps to determine how more than $400 billion dollars of federal funding each year is spent on infrastructure and services. That’s money we can ill afford to turn down. It also might decide whether Minnesota loses a congressional seat… Get more info here, the countdown to April 1st and official Census Day is on!
Health Care Disparities
Now that we are collecting reliable and valid outcomes data on our clients, we are becoming concerned that not all clients receive the same benefit from our services. While there are some hints of racial and ethnic disparities, clients whose incomes are at or below the poverty line tend to not do as well as clients with more resources. In this next year, we will be examining these disparities and working to develop strategies to improve the outcomes for our all of our clients, regardless of race, ethnicity and socioeconomic status.
So that is just a taster of things ahead, and doesn’t include the 20th anniversary of the Americans with Disabilities Act, major federal health care reform, and the 2010 elections including a new Governor for Minnesota. Whatever 2010 does have in store, Courage Center will continue to provide access, quality and choice of care for all individuals experiencing barriers to health and independence.
When I first heard of the world of blogs, twitter, and the other social media tools, I had some skepticism. So much of what we do in Public Affairs & Research is fuelled by face to face regular contact with elected officials and state departments. We need to have all the necessary information to give them to support and pass legislation that is critical to Courage Center and the greater disability community. These meetings often see us thrown many curveballs in the relevant information that legislators want. Paraphrasing Burns, our ‘best laid schemes’ are regularly changed and our tactics altered. All of which can be difficult if you are not there in person to adapt.
However, over the course of the last few years I have become very excited about social media and its power to effect change and mobilize advocates. My own personal experience living overseas, has seen me recognize how fantastic Facebook can be to stay in touch with all my friends back in England- and it’s also a great deal easier and cheaper than dealing with the six hour time difference and multiple phone cards. Likewise, it’s helping spread the word of Courage Center through personal experiences. The last time I checked the Courage Center cause had 1,478 people supporting our cause and its still growing. And this is just one outlet for people to support and talk about Courage Center.
Courage Center is firmly plugged into many social media tools, recognizing the importance they have to non-profits today. For example, in our work in Public Affairs & Research, nothing will ever replace face to face contact with legislators and real people telling real stories- which is why our Advocacy Day at the Minnesota State Capitol is so important (NB: Advocacy Day March 9th 2010 fill your calendars! ) But if we can use social media to bring people to the Capitol for those face to face meetings it becomes invaluable.
Of course we are growing daily with our web outreach at Courage Center. More and more video is being added to tell our consumer stories. So much so we have a YouTube channel. We have entered the blogosphere with the fantastic Camps blog, the Policy & Research blog and a Sport and Rec blog very soon (Watch this space). Finally, if you are a Tweeter you can follow Camp, HandiHams, Public Affairs and a general Courage Center updates all on Twitter.
So I guess while you cannot transfer everything you do from you daily job to the web and its tools, the augmentation of your organizations strategies is certainly a reachable goal. Plus as technologies advances everyday, you better join in the race or face being left behind and lapped by the competition.
The term “research” from an organizational perspective can elicit a wide variety of responses. For those who have not had much experience in the field it may simply be met with an attitude of “I’m not going there.” But research and outcomes has become essential in the provision of services to determine if treatment and interventions are effective. It has also become increasingly more important to organizations competing for funding. Courage Center has been making important strides in recognizing the significance of research and outcomes as related to providing services to people with disabilities and addressing issues related to public policy.
Thanks to a grant form the Jay and Rose Phillips Foundation, the Courage Center’s Public Affairs and Research department has created a training curriculum to provide resources to develop and build a culture of measurement organizationally. Workshops are provided monthly to staff at the Courage Center and two other rehabilitation organizations in the community. With live training at the Courage Center provided by the director of Outcomes and Research, Dr. Nancy Flinn, interdisciplinary staff from the three organizations (Courage Center, Sister Kenny Institute, and AXIS Healthcare) receive training through several satellite locations through a webinar.
Monthly trainings are designed to be educational for the beginner to the more advanced practitioner in several interdisciplinary fields. The training ahs been approved by the Minnesota Board of Physical Therapy for Continuing Education Credit.
Snowing! At the end of October? I thought I was done with this when I moved out of Duluth. (My father always referred to the weather in Duluth as 9 months of winter and 3 months of poor sledding.) Unfortunately, I think I’m getting used to this weather – I was at the American Congress of Rehabilitation Medicine meeting in Denver last week, and it snowed there, too!
It was a very interesting meeting. This is the meeting of rehabilitation academics and physiatrists – lots of big names. Twice I found myself chatting with someone, and then looked at their name tag and thought “I was talking to _____! Wow, she’s just like a regular person!” But in general, the focus of this group is a bit narrow for my Courage tastes – they are really not in tune with lifetime consequences of an injury, or on maintaining health and wellness. Their focus is pretty exclusively on the initial period after a traumatic injury. But I made inroads, and found some like-minded folks. I had an animated conversation with Dr. Mark Johnston, who is in Milwaukee and is interested in Care Coordination and how care coordinators make decisions. I also found 2 people who were interested in exercise and fitness, and one guy (Mel from NIH – I would have learned more but we were sitting down and I couldn’t read his nametag) who was very interested in some of our findings in the DHS Pay for Performance Pain grant we are running in the residence.
The most interesting finding was a presentation I didn’t go to, but heard about after. One of the researchers was looking at the effectiveness of transcranial electromagnetic stimulation – using an electro-magnet held over the head to create an electrical field in the brain. This has been used for a couple of years, but with pretty inconsistent findings. So, this researcher found significant differences in the improvement on the experimental group over the control group, but felt that the differences were small and he wouldn’t recommend it to patients because the difference in response wasn’t great enough. However, he followed up and did some genetic analysis, and found a genetic marker that was 90% accurate in predicting which clients would improve. This was really interesting, because in rehab we haven’t looked to genetics to play a role in recovery! It opens up a whole new avenue of investigation!
So, 4 days of meetings and some new ideas to think about. Well worth the snow!
People always talk about advocacy in action and supporting issues you truly believe in, but can you really make a difference? A big part of Courage Center is its focus on empowerment and independence, and what better way to become empowered than standing up and being counted.
We have always encouraged people to speak to their legislators, talk about their challenges, successes, and ideas for how policy can lead to greater independence and health outcomes for individuals with disabilities. Our goal is to make everyone an expert on disability, so if a legislator hears about an importance piece of legislation they can immediately recognize how it will influence the disability community. We are fortunate to have many great legislative champions across Minnesota both at the state level and federally. Former Congressman Jim Ramstad just received the National Courage Award, and you can read about our recent meeting with Senator Amy Klobuchar and Senator Al Franken’s visit to Courage Center in one of our past blogs.
However, our work still has much room for expansion. The state deficit in Minnesota ($6.4bn) saw many deep cuts to programs and service vital to individuals with disabilities. So while the recession is now over (apparently), Minnesota still faces tough times and tough decisions to ensure that the state budget remains balanced.
As advocates of disability, it is vital that we are heard, and tell legislators our real life stories and challenges faced on a daily basis. This will give them information to take back to the Capitol and make the right choices when it comes to cutting or extending programs, eliminating or enhancing services. So in fantastically well timed fashion, the Minnesota Consortium for Citizens with Disabilities has a series of 12 Town Hall Forums planned over the next few months exactly for this purpose. These events which Courage Center has played a big role in planning aim to educate people about the impacts from the 2009 legislative session, teach advocacy skills and how to make a difference in policy, and most importantly speak directly to legislators about disability. Individuals will have the opportunity to talk to legislators just as they would in a committee hearing- telling their story.
We have planned these forums across the state, engaging many different legislators, communities and people. Everyone will have the opportunity to learn, educate and make a difference for Minnesotans with disabilities. The goal is that when the legislative session begins on February 4th, there is not a legislator in St Paul that has not heard from the disability community and is a newly converted disability expert and champion.
Take a look at the event dates and locations here, and join us in moving Minnesotans with disabilities forward.
Courage Center has always championed the current priorities of increased access and cost containment, particularly for those with disabilities and chronic conditions requiring frequent contact with the health system. Specifically, we strongly support:
Payment Reform
Reward coordination: Complex individuals with high utilization patterns need help coordinating their care in a highly fragmented system. Accelerating current health care home demonstrations now under CMS direction is wise.
Pay differently for service delivery: current Medicare and Medicaid fee schedules don’t reward positive outcomes or create incentives to achieve them. Historically, high-impact, preventive services have been undervalued. Encouraging shared risk arrangements under the proposed accountable care organizations is a great first step toward improved care planning and better communication among providers at different points on the health continuum.
Post-acute care is critical to the health of individuals seeking to return to their lives and livelihoods upon discharge from a hospital. New financing options must recognize the value of organizations like Courage Center and must not give complete financial control of post-acute services to hospitals.
Medicare
Eliminate geographic disparity of payments: The Dartmouth Atlas Project long ago established that many Midwest and New England states achieve better health outcomes for less money than other parts of the country. Addressing this inequity would dramatically reduce the current cost-shifting that is now occurring as a result of inadequate Medicare reimbursement.
Extend the Special Needs Plan (SNP) designation scheduled to sunset Dec. 31, 2010. Authorized under the Medicare Modernization Act of 2003, SNPs offer an opportunity to not only coordinate but integrate care for those dually eligible for Medicare and Medicaid.
Overall health requires more than medical care for those with complex and chronic conditions. Access to social supports and assistance with coordinating medical and non-medical needs is needed to achieve and maintain health.
Support the CLASS Act, which offers a federally coordinated, voluntary long-term care benefit option for those electing to plan for their future long-term care needs.
As part of Courage Center’s commitment to civic engagement, we feel elections and the act of voting play a huge part in the expression of rights and independence.
Voter access was brought into focus by the Americans with Disabilities Act (ADA) in 1990 and moved forward by the Help America Vote Act (HAVA) in 2002. However, the work is not complete. In the PowerPoint above we explore what barriers there are to voting for individuals with disabilities even today. In conjunction with a survey of Minnesota voters, we found significant problems with voter access, including physical access to the polls, difficulty with transportation and parking, the logistics of voter registration and problems with accommodations by election officials. Solutions to the most common voting challenges will be presented, including access checklists for voting locations, community action to increase participation of people with disabilities, and some more interesting and innovative solutions to increase voter turnout.
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