communityworks inc receives first Governor’s Excellence Award

Topeka, KS; Nov 15, 2010. Governor Mark Parkinson and Social and Rehabilitation Services Secretary Don Jordan presented Kansas’ first-annual 2010 Governor’s Excellence Awards to communityworks inc at a ceremony in the Kansas Statehouse today. The award recognizes communityworks inc for their exceptional commitment to assisting and empowering Kansans with disabilities.

“Just a few short months ago, I was honored to establish these awards and pay tribute to those who devote their time and their energy to helping individuals with disabilities thrive in their communities,” said Parkinson. “These extraordinary Kansans are a testament to our state’s commitment to providing the utmost care and support to our citizens.”

The Governor’s Excellence Awards recognized communityworks inc “for exhibiting a strong ability as an Agency to Help Individuals with Disabilities Achieve Self-Sufficiency Through Independent Living Skills and Individualized Employment.”

Communityworks inc was founded by Dr. Janet M. Willliams in 1991 to assist people with brain injuries and other disabilities.  The team has developed a model that gives control back to the individual with a disability by coordinating community services with one comprehensive tailored plan. Service locations include Topeka, Lawrence, Leavenworth, Kansas City, Overland Park and surrounding areas.

“Over the years, Kansas has developed a statewide network of provider organizations and individuals committed to the state’s vision of community and home-based care and support of individuals with disabilities,” said Jordan. “Today’s honorees represent the finest of this commitment which empowers those with disabilities to live active, independent and fully engaged lives.”

Governor Parkinson established the Governor’s Excellence Awards through Executive Order 10-09 to be awarded annually. The secretary of the Department of Social and Rehabilitation Services received all nominations before submitting them to the governor for a final decision. Other disability service providers that were nominated for each category were also recognized by the governor and the secretary.

Upon hearing the announcement of the recognition, consumers and professionals who have worked with communityworks inc shared their thoughts:

“They made my dreams come true. communityworks inc helped me move from a nursing home to my OWN home. People say it’s impossible, but they get it done. I take my hat off to them.” Bob Kania, of Lawrence, KS.

“We change individuals’ and families’ views of themselves as capable and contributing members when we take the approach that communityworks inc takes to support an otherwise vulnerable population. They expect the individuals and families they serve to be competent, successful and contributing members of their neighborhoods and towns.” Winnie Dunn PhD OTR FAOTA

Professor, University of Kansas

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Happy Birthday Brain Injury Association of America

The Brain Injury Association of America is 30 years old today. I wouldn't be where I am right now without the support and love of Marilyn Price Spivack. She started it all and continues to be an inspiration to me. Thank you for your vision and passion Marilyn. 

I could tell thousands of stories about my 4 years at the National Head Injury Foundation, now the Brain Injury Association of America. The three greatest things that I learned while at the NHIF are: 1) The family is there forever, no matter what form, for the duration, 2) it's about relationships, 3) people want to live in their own home and may need a hand up, but certainly not a hand out. 

Here's to another 30 years x 10.

New Services

This week has been another exciting week at communityworks inc. While everyone is out doing our great work, we have received approval to provide case management for the FE (frail elder) waiver and we've received approval to provide services from the VA for services members with brain injuries. It took many hours to make this happen and I want to express appreciation to our staff. Things are never dull here and change is constant. Thankfully, it's in the right direction.

Where do we fit?

I was in Alaska last week presenting to a group of people about our philosophy of supporting people to have control over their own lives in Kansas. Based on the comments of the people who came up after the talk, people are very curious about what we are doing. Of course, it's difficult to describe our work in 45 minutes or less so I mostly stick to stories that people have given me permission to share.

The more word has spread about what we are doing, the more push back I've been getting about "taking people out of programs" as if that could never be in the person's best interest. I am now convinced that the more people protest the more they are threatened by what we are doing.

In my world, rehabilitation is 5% of a person's life and the "learning to live a with a brain injury" part is the other 95%. Life experience is everyone's best teacher and setting people up to succeed at home can never be a bad choice. The focus needs to be on the best ways to help people to live with their own disability. Hm, that sounds a lot like a program to me.

Next week we are off on a personal journey to Kenya. I will posting mostly on my Facebook page and might have some stories to share here as well. I would appreciate comments here or on my FB page.

Stay cool,
janet

Friday update for the week of 7/5-7/9

Here is the Friday update for the week of 7/5-7/9

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ATTN:  There is a consumer who is desperately in need of a computer desk.  If you or anyone you know has one to contribute, please contact Lynne at lynnew@mindsmatter.com

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Check out the new website! J  Still communityworksinc.com.  Remember: once the website went up, TLS emails stopped being in existence.  Now, all of the events and news will be up on the website, and the latest resource updates will be updated in Janet’s blog.  *Remember to send me any additions or changes for the website by next Friday, July 16!

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Here are a couple of resources we’ve gathered this week:

https://www.advancedirectivellc.com/advanced_directives_by_state.html

http://www.mobar.org/99b8baa9-d44d-4756-9b40-fcdf1dd91ceb.aspx

NIJC: http://www.immigrantjustice.org/programs/programs/programs.html

National Alliance for Hispanic Health: they provide health education, health news, political advocacy, support in both languages, and resources

http://www.hispanichealth.org/resource/help.aspx

National Immigration Law Center (NILC): Defend the rights of immigrants; policy analysis and advocacy; impact litigation; building coalitions and capacity; trainings and much more!

·         DREAM ACT: HS education for undocumented; provides updates and rights for education and tuition rates

·         Employment and workers rights for undocumented

·         *Public benefits –what they have access to and understanding their rights

http://www.nilc.org/immlawpolicy/index.htm

Documented immigrants (not citizens) health insurance options: http://www.immigrant-health-insurance.com/?source=google

Healthcare Volunteer: free healthcare for anyone under Federal Poverty level

 http://healthcarevolunteer.com/patients/

Shepherd’s Center of KC Central: Friday educational activities for seniors (really low cost); Extreme Yard Rakeover (volunteers rake yards in Fall and Spring for physically and financially unable senior in JC and parts of KC); Friendly visitor (OP); Intergenerational Computer class (match a senior with a HS student); Caregiver Support-line (of seniors, provides support and referrals); Meals on Wheels; Medicare Advocate (call- free info and advice); Wheels that Care (volunteers provide free medical/grocery trips to seniors- parts of KC)

http://www.sccentral.org/SiteResources/Data/Templates/t5.asp?docid=515&DocName=PROGRAMS

*Gwen Marshall is the Volunteer Coordinator

*David Hooper is the Medicare Advocate

*Megan Ross is the Aging Specialist for Caregiver Support-line

Home Health Agencies that take Medicaid: (confirmed by referral source)

Interim Home Helpers 913-381-3100

Integrity Home Care 816-254-3131

Catholic Community Health Care: 913 433 2000

Assured Health Care: 816-415-8200

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Remember to keep on checking Janet’s blog for interesting and pertinent updates and information - http://communityworksinc.blogspot.com/.

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communityworks website features great changes

www.communityworksinc.com has undergone a complete renovation. Still filled with stories, we have added many new features including:

* A way to search our attendant care listing by county for people using our attendant care services

* A calendar of events that is updated regularly

* A link to this blog which will now include weekly staff resource updates

* Faster and easier access to the website for staff email.

* Job applications for attendant care and other positions online.

And much, much more.

Please feel free to share it with others and I'd love to hear what you think about it.

Janet

Lost Inside My Head

Lost Inside My Head

By John Hoyt What a difference a few seconds can make. I fell two and a half stories off my roof and hit the crown of my head on a six foot 4x4 wooden post and then landed on a steel “T” post just under my right jaw which broke the jaw, two teeth, fractured the voice box and three vertebrae in my neck and stopped just a micro millimeter short of cutting the secondary vein to my brain, but I still threw a blood clot which caused a mini stroke. That was October 31, 2000. Now I am 100% disabled with a TBI. The strange thing was that after the fall my family knew that something was wrong but the doc’s and everyone else were focusing on the facial and vertebrae damage and not on the brain itself. Consequently it took five years before I started to get some help and only after finding communityworks, inc. by default. The saddest part of all this is that I lost my thirty year marriage and strained or damaged all the relationships and foundations of my life taking all the blame for being lost in my head, never knowing it was a brain injury which was at the core of my problems. Now is a better world and life than then. Healing is a better direction than lost. Future is a direction I can live with instead of dreading; a peaceful mind and life is a reality I can live with instead of the mental and behavioral chaos that I endured for too many years. What the support system which I now have in place has provided is first and foremost is confirmation that I can find and achieve the right direction. In short, as I battle the day to day frustrations and setbacks, it is the positive guidance I receive which quite frankly, on my worst days, keeps me going. As I move towards achieving the goals which I have set for myself— some lofty, some mundane, it is this support system which helps me maintain the balance and yes, minimizes the discouragement. Am I still lost inside my head? At times. The short term memory loss is still the most frustrating, but I am grateful that the long term memory is sharper than ever. Simply put. There’s hope after TB

Medicaid Funding at Risk

ACTION NEEDED!

Extend Extra Medicaid Funding Through June 2011

June 7, 2010
BACKGROUND:
We are writing to ask you to contact your Senators, Brownback and Roberts (KANSAS) or Bond and McCaskill (MISSOURI) to ask them to support the extension of the current elevated Federal Medicaid Assistance Percentage (FMAP) that is currently being debated in the U.S. Senate and will be very important to states come the end of this year!

Originally, both the House and the Senate acted to extend the extra match through June 2011, the end of the fiscal year for states. However, the offsets that were supposed to pay for this extension went instead to help pay for the health care reform legislation. Without an extension, the money will run out Dec. 31, 2010, and many states will be forced to make drastic cuts to the federal-state program. The 2009 federal stimulus package provided $87 billion to increase the federal share of the program through December (it included a 6.2% increase of the federal medical assistance percentage (FMAP) under Medicaid).

Last week, House Democrats debated HR 4213, the vehicle for this extension and chose to remove the provision extending extra federal Medicaid funding. With states in fiscal peril due to the recession and unemployment, it is vital that the extra federal funding continues in order to keep health care accessible for many brain injury patients and caregivers!

SCOPE:
Everybody can Take Action

TARGET LEGISLATORS:
All Federal Senate elected officials

Sample Message To Senators:

As a person in your state affected by brain injury, I ask you to reinstate the extension of the current elevated Federal Medicaid Assistance Percentage (FMAP) into HR 4213. States are struggling financially due to the recession and increased unemployment and it is imperative that people with brain injury continue to receive access to care through this federal match. Your constituents deserve timely access to brain injury treatments so that they can become able to function within the community again, and avoid long term care, permanent disability, and as a result, increased financial strain on our public programs such as Medicaid.

I ask you not to ignore this devastating blow to access to affordable health care. While implementation of health care reform continues in the next few years, there are people in your state that need this important care now!

Sincerely,

(Your name and address here)

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To Contact Kansas Senator Sam Brownback CLICK HERE: http://brownback.senate.gov/public/contact/emailsam.cfm, or write, fax or call him at:

Senator Brownback
303 Hart Senate Office Building
Washington, DC 20510

Phone: (202) 224-6521
Fax: (202) 228-1265

To Contact Kansas Senator Pat Roberts, CLICK HERE: http://www.roberts.senate.gov/public/index.cfm?p=EmailPat, or write, fax or call him at:

Senator Roberts
109 Hart Senate Office Building
Washington, D.C. 20510-1605

Phone: 202-224-4774

Fax: 202-224-3514

To Contact Missouri Senator Christopher “Kit” Bond, CLICK HERE: http://bond.senate.gov/public/index.cfm?FuseAction=ContactUs.ContactForm, or write, fax or call him at:

Senator Bond
274 Russell Senate Office Building
Washington, D.C. 20510-2503

Phone: (202) 224-5721

Fax: 202-224-8149

To Contact Missouri Senator Claire McCaskill, CLICK HERE: http://mccaskill.senate.gov/?p=contact, or write, fax or call her at:

Senator McCaskill
717 Hart Senate Office Building
Washington, D.C. 20510-2504

Phone: 202-224-6154

Fax: 202-228-6326

Thank you for your support!

Patience and persistence

Yahooooo the Kansas legislature passed a budget that reinstates the 10% Medicaid cuts effective July 1, 2010. A long 6 months of patience and persistence have paid off. Even with the cuts, we have supported more people to leave institutions this year than last. Amazing work everyone!

Of course, our work is far from done. There were many lessons over the past 6 months and many I am still digesting. The greatest gift has been the way everyone stuck together and focused on what we do best. In tough times there are a lot of trite sayings that get thrown around...when times are tough the tough get going...people are like tea bags, they get stronger in hot water. I know, I know, I've put my own little spin on those gems, but you get what I mean.

This has truly been the greatest challenge I have had as a business owner. It may even be the first time I've so strongly identified myself as a business owner. It has helped me pull together with our team and identify where we are heading. Our number one goal is to diversify our funding. We will continue to assist people using Medicaid to become independent and we will focus on people with private insurance and other funds. We have a model that works for people and saves money, it's a winning formula for everyone.

Our second focus is to put resources into training and maintaining the best case managers, transitional living specialists and therapists in the nation. Over the next few months we will be rolling out a whole new transitional living specialist retention process and training curriculum.

And finally, our focus on customer service will be ramped up tenfold. We want to work with people who desire to work on becoming as fully included in the community as desired and decreasing the amount of paid staff in their lives. We want people to have strong, rich relationships with people they can care about and who care about them.

So, thanks for hanging on for the ride and hang on, because we have more hills and loops ahead.

Sample letters to the Editor

It's time to send your letter to your local paper... send us your link once it's published and get a $20 gift card to Dairy Queen.

By Lisa Bailey - Lawrence

March 8, 2010

To the editor:

Let’s talk about the Legislature’s shortsighted cuts to Medicaid. A program funded through Medicaid with a 70 percent match from Washington, the traumatic brain injury waiver, saves the state money with focus on community-based services for TBI survivors versus more costly maintenance in a nursing home. Beyond acute care, rehabilitation services and community supports are provided for those learning to live again with a life-changing injury. The waiver is time-limited, based on progress toward the individual’s goals for independent living, and comes with a client obligation (premium) determined by income over $750/month.

If the person recovering from a TBI is you, it’s time to grow up again. You must relearn how to walk, talk, think, recall and behave. Recovery varies greatly, influenced by many factors, but your best outcome depends on availability of services. Most of these aren’t covered by insurance.

The good news, at least for now, comes with the TBI waiver giving you the opportunity to live with dignity and respect as part of the community. You’ll have a case manager to navigate the details; personal care attendants if needed; physical, speech, occupational, and cognitive therapists to help you figure out new ways to do things, and transitional living specialists to help you use the new strategies in daily life.

Contact your representative today; the 20 percent cut hurt us badly with more planned. Remind them that a $200,000 cut to this program takes away $800,000 when matching funds are lost. Ask the going rate for a nursing home.

Dear Editor,

Two days before Thanksgiving Governor Parkinson made sweeping 10% cuts to Medicaid in Kansas that began on January 1, 2010. Those cuts were to every person using Medicaid, every provider accepting Medicaid and every citizen who is one car wreck away from needing Medicaid.

We are now in mid March and see that durable equipment providers have stopped taking Medicaid, many home health agencies are no longer taking Medicaid and nursing homes are limiting admissions. Every agency in Kansas has cut staff and pay. The cuts have been deep and have damaged the infrastructure Kansas has developed over the past 30 years. The stress has become palpable.

I believe there was some hope on the part of Governor Parkinson that all those affected by the Medicaid cuts would band together and implore the legislature to look at tax exemptions and push for a sales tax. Unfortunately, most agencies are so busy scrambling to help the people affected by the cuts it has been a challenge to organize. Additionally, those who are trying to educate legislators are being rebuffed with comments that the cuts are just eliminating waste and looking at sales tax exemptions is the devil's work. Even churches have rallied behind the call to leave taxes alone, at the expense of those needing Medicaid.

Can you please tell me how severely limiting people's access to wheelchairs, physicians and medical care is anything less than a death panel? Isn't it sad that when people are down and out they are moved to the middle of a battle between ideologies of the left and right? When will someone stand up for the person in the middle and restore the Medicaid cuts?

This isn't a battle between right and left. It's a battle between right and wrong. Continuing to use people on Medicaid to balance the budget is a blemish on both the Democrats and Republicans in Kansas.

Sincerely,
Janet Williams
7189 Conser Place
Overland Park, KS 66204

There ought to be a law...

I am currently in Iowa getting ready for Part II of a presentation on Community at the Brain Injury Association of Iowa's annual conference. There are 300 people here for the conference, a combination of people with personal experiences, professionals and providers. There are a lot of programs in Iowa and, like all states, they are experiencing budget cuts.

Now here's the maddening thing that has been going on since the early 1980s. States send people with brain injuries out of state for services, using precious tax dollars, with no plan to bring people home. Iowa has 50 people with brain injuries out of state for services, costing 4x more per person than in state. Kansas has 22 people out of state at a cost of over $700 per day, when the average of instate services is only $120 per day for comparable services. There are some people who do need short term hospitalization for medication stabilization but once someone leaves the state, they are usually gone for a year or more.

There are several reasons states continue to use this avenue. First, archaic laws make institutional services an "entitlement" and community based services an exception or "waiver." Second, heavy marketing from out of state providers and no accountability for said providers combined with state agency staff who are overworked already and you have a formula for more people going out of state. And finally, there are providers who think it's just easier to send someone out of state rather than train staff on how to provide positive behavioral supports or address the individual needs of the person.

You would think someone would pay attention to millions of Kansas dollars going out of state. We can serve 300 people at home for a year for the same amount of money as 22 people out of state. There ought to be a law...

Is it really complicated?

Our state legislators have priorities. Redo the state house for the tune of $249 million and cut services to people with disabilities that are proven to get people back to work. It took 2 week to begrudgingly offer up a 5% cut in their own pay for their part time job and only 10 minutes to slash Medicaid. They know when their pay cut ends, they can't say when the cuts to Medicaid will end. When I've asked why they can't restore the cuts I hear, "it's complicated." The proverbial pat on the head. We need a hero. Who will it be?

http://cjonline.com/news/legislature/2010-01-24/programs_for_disabled_face_cuts

http://cjonline.com/news/legislature/2010-01-24/consumers_speak

It's not about the money.

I am getting ready to put some testimony together for various committees for the Kansas legislature. I've been sitting in meetings listening to testimony and having many meetings with legislators. I have a constant feeling that no one really gets it. The legislators keep talking about costs and money and the economy. I hear agencies and providers talking about caseloads and money and demand for services. I see people lining up in two lines, one behind deeper budget cuts, the other behind raising taxes. When did life become such a dichotomy?

I don't hear anyone talking about people.

I am trying to figure out the message. Is it that those wanting deeper cuts really think there is that much waste? Or do they think that someone in a coma is freeloading off the state? Is it that those wanting additional taxes think we don't pay enough? It's enough to make my head spin.

And then I go talk to Joe. Joe was jumped about 16 years ago, beaten and stuffed into the trunk of his car. The only reason he lived is because a construction worker on the way to work heard him moaning the next morning. He needed to have someone with him at all times at first. His mother went to visit him at the nursing home one day to bring him clean laundry. She left with the clean laundry and Joe in the passenger seat. He was asked to leave, but he still couldn't be left alone. His mother quit work and did all that she could to get Joe heading in the right direction, first hiring staff and then helping him get set up in his own place. She died a month later.

Fast forward 16 years. Joe is still in his own place and now has a 3 wheel bike. He goes to the grocery store every day, when the weather is nice, to pick up groceries for his neighbors. He walks dogs and delivers newspapers. He is an important part of his community and gives back. He has no paid services and is off Medicaid now. His disability has not gone away. His community has been mobilized, mostly by him.

Joe is the reason we need stop cutting services funded by Medicaid. There are 1600 other Joe's waiting for the chance Joe got. Not a chance to be dependent on the state, but the chance to move through a system that has been set up to help people become connected in the community and stop using services. The 1600 people who are waiting are using far more resources while they are in limbo, whether that be in nursing homes that cost 3x more, or at home with family who have given up jobs and no longer pay taxes.

Services need to be funded because it's the right thing to do~ for Joe, for the 1600 people on the waiting list and for the future Joe's who could be someone you know.

Perhaps I knew what I needed to say all along.

Governor Parkinson calls for reinstating 10% Medicaid cut

Governor Parkinson gave a great speech tonight, not only because he asked to reinstate the 10% Medicaid cut, but because he proved he understands the enormity of the challenge ahead. He has called for an increase in cigarette tax and a temporary 1% increase in sales tax. Now it is time to get behind these proposals and let your legislators know what must be done. It will be a very difficult battle in an election year for many Republicans.

Here is the full text of the Governor's speech, it is worth reading:

http://www2.ljworld.com/news/2010/jan/11/2010-state-state-address/

Tips on writing:

* Handwritten letters and personal visits are best.
* Tell how the 10% cuts have personally affected you.
* Remind your legislator that you vote, you have friends who vote and what you expect them to do.
* Send a copy to me at the Overland Park office (or drop it by one of our offices and it will be faxed in).

Please let me know the result of any meeting or inquiry. I will be going to Topeka at least one Tuesday a month and whenever I can testify as to the success of the services we provide for the quality of life for people with disabilities in Kansas.

Staying Steady, Staying Strong.
Janet (janetw@communityworksinc.com)

Staying Steady~ I already have a pen.

In 2002 I went to Kenya on a trip with a group of 9 other people. I went to fulfill a childhood dream of going to Africa. The timing seemed right since both of my parents had died within 5 months of each other the previous year. It was a time of healing and reflection. The group spent several days volunteering at an orphanage run by the Missionaries of Charity, the order of Nuns founded by Mother Teresa.

Growing up Catholic Mother Teresa’s nuns were the Super Bowl Champions of nuns. They were the pinnacle of sisterhood. I was quite eager to talk with the nuns to talk about their day to day life and learn more about their calling. To a person I found the women to be strong, charming and full of humor. They were clear in their principles and answered my disbelieving questions with a knowing smile. Do you really only have 2 saris? Yes. Is that your only pair of sandals? Yes. Is it true you all sleep in one room? Yes. Did you ever get to meet Mother Teresa? Yes.

I found myself particularly drawn to one sister from Tanzania. Every day we shared stories about our lives and I got to talk at great length about my parents. One day as I approached her I offered her an ink pen. She smiled and said, “Oh no thank you, I already have a pen.” I thought she hadn’t heard me or didn’t understand. I was offering her a pen, a simple token. She smiled again and reached into her sari to hold up her pen and said, “Thank you, I already have a pen.” Clearly she didn’t understand. She might lose that pen, that pen might run out of ink or someone she met along the way might need a pen. I explained all of that to her and she smiled again, holding up the pen, and said, “I already have a pen.” Her statement was, once again, followed by the knowing smile.

I have fund myself thinking about that encounter a lot over the past several weeks. I’ve had more than one “sky is falling” moment since the State of Kansas cut Medicaid rates by 10% with little more than a month’s notice. I go back to the pen. In the process of planning for the cuts and figuring out how we will go forward, I pause to think about this moment, this time and this event. What is important? I don’t have to plan for what else might happen, I must plan for what is happening right now, in this moment. For now, we have figured out our plan for the 10% cuts and it is a good one. For now, we will continue to focus on what we know must be done, continue to assist people to build social capital and relationships in the community. Increasing support networks not only contributes to overall happiness and well being, it allows people to free themselves of paid caregivers and reliance on the state. I can deal with whatever is next, once it arrives. For now, I already have a pen.