There’s a very interesting article in the Dec/Jan issue of Fast Company magazine called “The $70 Billion Scam” (http://www.fastcompany.com/magazine/161/medical-fraud). It’s about Medicare fraud, which is rampant inMiami and is now spreading to other large cities in the country because it is so lucrative.

An expert on Medicare fraud is quoted as saying that, at a minimum, 10% of Medicare claims are fraudulent. The author of the article points out that credit card companies – where fraudulent activity hovers around 1% – would be forced to close their doors if they experienced this level of fraud.

It’s not that solutions don’t already exist… the credit card industry is miles ahead of the government in using tools for recognizing fraudulent activity. Even the Centers for Medicare and Medicaid Services (CMS) are exploring options, with a pilot ID card, in Indianapolis.

The Obama administration proposes trimming $248b from the Medicare budget over the next 10 years; that’s a lot of benefit for a lot of people that rely on a safety net. A 10% reduction in fraud – just 10% – would release $80b a year. A no brainer.

For many individuals with developmental disabilities and their families, Medicare is a lifeline. It makes my blood boil when I think about the amount of money that is hemorrhaging out of the system through fraud. When my blood boils, I do something to lower the temperature. In this case, I’ve written to my senator suggesting the government increase anti-fraud activity – instead of punishing the people that rely on Medicare and Medicaid by reducing their benefits and services, we need to plug the hole in the dam and divert those resources back to where they belong.

I believe that our legislators need to hear our concerns loud and clear – I hope you write to yours about what concerns you.

Ellia Ryan - Director of Development at The Arc of King County

Thoughts from Olympia, 11.28.11, 3:00 PM

Just over an hour ago, Room 4 of the Cherberg Senate Hearing Room buzzed with the fervor of desperate and yet hopeful professionals, public servants, and stakeholders—like me. I was securely seated at the back of the room by the exit door. Camaraderie seemed present, as people chatted and shared their vital messages. Those who planned to speak quickly read and re-read their lines in anticipation of testifying before the Human Services Ways and Means Committee about the beleaguered state budget.

I reflected on my impression of these legislative grounds—walking far distances to enormous buildings and cold gathering places in order to be heard. I saw the huge State Patrol presence and felt at once annoyed by their vigilance and protected by their presence. I recalled the dedicated group of individuals with disabilities, their advocates, and their family members who had withstood bitter cold that morning to rally for increased revenue to avoid cutting folks off from their necessary lifelines. I represented children in the great State ofWashingtonwho could not vote for their own needs. I was there to be one more voice in the crowd. I felt proud to be an American, able to speak up and be heard.

I was encouraged by the power of a marching group of protestors, The Occupy Movement, who were on cue after our rally. Their banners waved in the same breeze as the American flag above them and they chanted in loud voices that sounded like a rushing river. They were part of the “99%” and bore messages ranging from supporting schools, to ending homelessness, to stopping corporate greed. I took photos and video to show my children the importance of speaking up in our free land. Indeed, we are also part of the 99%.

I had entered the hearing room in the Senate building anticipating the great speeches I would hear that would support that 99% of our society. But as the time grew nearer, so did the thundering explosion of “the people”, their angry chants filling the corridor outside as they pounded on walls and beat raucous drums.

In walked two young men in black, marching toward the front of the room with confidence. Their group did not follow. In irritation, they beckoned the rest to come forward. Again no one followed, so these two leaders returned to get everyone. And that is when I felt the brunt of their wrath. As one of the men reached back beyond me, I heard—then felt—a scuffle. Two angry men pushed hard against a middle-aged man, who was standing up to them. He, in turn, fell against my back. I put my elbow up to protect myself and then, my shrill voice betraying my mixed annoyance and fear, I said, “You’re hurting me! I’m just sitting here and you’re hurting me!” This seemed to stop them.

The larger Occupy group filed into the room surrounding all in the galley, blocking the view, and chanting loudly to drown out the words of the first speaker attempting to defend his concern before the Committee. In a brief pause, I was able to interject, “It’s not okay for you to hurt me!” A lone male voice said, “We’re sorry.”

It is difficult to know where culpability lies in this scenario. If we believe that “the people” are in charge, then we should also respect the one percent for their viewpoints. We should also respect that many of the speakers at the hearing today may not be with the “Occupy” group, but they also certainly represent the 99%. Were that not so, they would not have been willing to speak up for the most vulnerable citizens as they were. These brave speakers got there early, signed up for their two minutes to persuade legislators not to cut services, and they waited calmly. Sadly, the Occupy group took over, not even allowing these individuals to speak—repeatedly interrupting other important words in order to be heard themselves. I was reminded that even the Occupy group is just a fraction of the 99% that it represents.

By now, I was unnerved by the tension in the room. After watching the Occupy group “place” the legislators under citizen’s arrest, I decided to leave myself. I felt crowded by the accelerating conflict and worried that if I did not leave now, tempers would flare and worse things could happen.

One of the Occupy members, dressed in black leather, stepped forward to ask if I would like her to escort me out of the building. I was grateful because I did not know what lay out in the hallways. It sounded loud and cacophonous. In her, I saw the decency that underlies their passion and the goodness that comes from knowing what it is to live without. She seemed to understand that being victimized by the system does not mean she must become the aggressor.

Even though I was afraid, I saw that at the heart of this conflict, there are individuals (the majority of the 99%) who know that they must speak on behalf of those who are vulnerable—the children, people with disabilities, jobless and homeless individuals and families, and our elderly—without trampling on the rights of others. They know this, and do it peacefully, reaching out with compassion to others who possibly share their viewpoints.

In the end, the message from the “Occupy” movement and the rest of the 99% seems to be similar: Do not cut vital services that so deeply affect people’s lives—even if you have to add revenue to the mix.  And of course, perhaps, one of the greatest messages of all:  We—all of us—are “the people”.

- Anonymous

We’d like to hear from those of you who attended or who have seen the film. What did you think of the film or of Temple Grandin’s story? What stood out to you? What were you inspired by?

I myself was struck by the open and honest discussion we had between the two screenings. A young mother spoke of her infant son who was newly diagnosed with autism. Her grief, desires, and courage were reflected in the film through Temple Grandin’s mother. That universal sentiment of “How can my child be the best they can be?” is something that all parents feel and it is such an urgent feeling when our children are young. In the film, Temple Grandin’s mother had to answer these questions for herself, as the dictates of the time suggested that Temple should have been institutionalized. Her mother’s education, resources, and abilities all played a part in helping Temple to become who she is today.

As a parent, I know that the goal for us is to help find and collect resources for each other so that all of our children reach their fullest potential and ability. Temple Grandin has contributed an enormous amount to this quest and by her courage has encouraged so many others.

What stories do you have to inform national activism?

Genetic Alliance Seeks Self-Advocacy Stories
The Genetic Alliance, the world’s leading nonprofit health advocacy organization, with input and support from The Arc and Family Voices, recently launched an online questionnaire asking experienced family advocates to share how they developed certain skills and created opportunities to influence systems. Their experiences will be turned into stories that inspire and encourage others to take action and improve the lives of people with disabilities and their families. If you or someone you know has a story to share, take their online survey before August 19. Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate.

http://www.zoomerang.com/Survey/WEB22CHWDRTF8R/

Please participate.

Seattle, WA (June 14, 2011) – Fifty years ago, President Kennedy called on the nation to bring people living with intellectual and developmental disabilities (I/DD) “out of the shadows,” to give them opportunities to lead productive, quality lives. Sadly, new data released today from The Arc’s Families and Individual Needs for Disability Support (FINDS) survey shows efforts have plateaued and not nearly enough progress has been made to create these opportunities. While budget cuts and economic strain have hurt all Americans, the 7 million living with I/DD and their families are among the hardest hit, with access to needed services drastically reduced.  In fact, 62 percent of caregivers reported a decrease in services for their family member with a disability.  Meanwhile, budget proposals in Congress threaten to dismantle Medicaid, making it even harder for people with I/DD and their families to achieve.

The Arc, the nation’s largest and oldest human rights organization for the I/DD community serving more than a million individuals and their families, conducted a national survey of nearly 5,000 respondents on educational, housing, employment and support needs.  The results of this landmark survey are being released in a report today, “Still in the Shadows with Their Future Uncertain.”

According to the FINDS survey, one-third of parents and caregivers (potentially 1 million families) reported that they are on waiting lists for government funded services, with the average wait more than five years.  InWashingtonState, 13,600 people – inKingCounty, 3768 people – are eligible for paid services but are not receiving them due to the lack of state funding.

The survey also found that the promise of integrated, community-based employment is not being met.  In fact, 85 percent of families reported that their adult family members with I/DD are not employed at all.  Opportunities for inclusive education, a pre-requisite for employment, are also not being met.  Too few students are completing high school – in fact, 52 percent of families reported that their family member with I/DD left school without receiving a high school diploma.

“The Arc of King County works tirelessly to be the GPS system inKingCounty’s developmental disability community, providing essential information and support for individuals and families,” saidSylvia Fuerstenberg, executive director of The Arc of King County. “Today’s FINDS survey impresses upon us the wide gaps in equality for our neighbors, friends and families that have a developmental disability.

“To help bridge this gap, The Arc supports members of our community throughout their lifetimes by helping them navigate through a complicated network of services, and supporting individuals as they speak for themselves,” continued Fuerstenberg.

The Arc of King County is the oldest agency in the Puget Soundregion dedicated to supporting individuals with intellectual and developmental disabilities. Locally, The Arc provides direct support, outreach, and advocacy for thousands of families inKingCounty, and works to empower people, individually and collectively, to maintain and build momentum in the disability and civil rights movements.

“As senior parents and caregivers to an aging daughter with a developmental disability we rely on the support of one another and consider The Arc an added member and blessing to our family,” saidUta Tipper. “We are so encouraged by the ongoing support, compassion, understanding and advocacy from The Arc, and we rest assured knowing we aren’t walking this path alone.”

FINDS found more than 75 percent of families report problems accessing non-institutional community care, trained reliable homecare providers, services and resources.  Families are shouldering tremendous financial strain as they’ve had to assume the financial and day-to-day support of their loved ones; many have even had to quit their jobs to stay home and provide care.

• 1 out of 5 families (20 percent) report that someone in the family had to quit a job to stay at home and support the needs of a family member.

• More than 80 percent of families reported not having enough retirement savings for their future as a result of using personal funds to compensate for the lack of services available to their loved ones.

• 62 percent of parents and caregivers don’t have a plan for where the person they support will live when the parent/caregiver gets older.

As a result of the report, The Arc is calling for more activism by people with I/DD and their families, launching a new effort to organize 1 million people to come out of the shadows and make their needs and concerns an issue in the 2012 elections.

To raise awareness surrounding the barriers those with I/DD face and how the organization can help individuals and families fully participate in society, The Arc has partnered with Lauren Potter, star of the hit FOX show “Glee.”  As a successful actress with Down syndrome who is achieving her dreams, Lauren represents the spirit of The Arc’s work.  Today, The Arc and Potter will kick off a public service announcement television campaign.

The Arc “Achieve with Us” Contest

To encourage people with I/DD to share their stories of achievement, The Arc is conducting a national contest via their Facebook fan page.   Starting today until July 14, entrants can share a story and a photo highlighting the accomplishments of an individual with I/DD for the chance to receive a trip for two toWashington,D.C.  For more information about the “Achieve with Us” contest, please visit www.facebook.com/thearcus.

For more information, or to see additional survey results, please visit thearc.org.

About the FINDS Survey

The web-based FINDS survey was conducted from July 22, 2010, through October 31, 2010. The survey was completed by 4,962 caregivers of people with disabilities.  Families from all 50 states and Washington, DC completed the survey. 

In my years of being involved with The Arc organization and participating in the conversations about people living in institutions and RHC’s, I have been involved in very intense discussions and disagreements about this issue. I will never apologize to anyone for being involved with The Arc and sharing the same values. I would like to add my contribution and perspective to this issue.

My son Lance Jr. had a near drowning accident when he was 7 years old. 3 weeks after the accident, we were told that he was “brain dead” and we as a family needed to make a decision for him to continue on life support or not….. We believed what the doctors told us and as I like to say now, “Lance Jr had other plans”. He lived another 17 years.

Lance Jr. did live outside of our family home for about a year and a half after his accident. He resided in a children’s home with about 16 other children who had significant disabilities until I learned enough about how to care for his medical needs to bring him home. It was the hardest time of my life because no matter how often I visited him or how long I spent there, it was not the same as living at home with his family where he belonged. He came home on Christmas Eve 1991 and it was the best Christmas present I ever received. We had licensed nursing care in our home to help care for him for almost 16 years.

Lance Jr. experienced a full, meaningful life at home with his family despite his significant disabilities. He attended his neighborhood school, shopped in his local community, banked with his neighborhood bank, got his hair cut at the local Fantastic Sams, he pursued employment as an adult.

People knew him. He touched people’s lives. When he passed away a little more than four years ago at the age of 24, 400 people came to his memorial service. 6 months after his accident, we got a call from a talent agency asking if Lance Jr. was willing to be in a Calvin Klein commercial. We were on the right track and the thing that gets me through missing him dearly is to know that he had a good life and experienced as much as possible.

Local Arc Chapters like The Arc of King County want people with significant disabilities to have the same opportunities as my son had. Local Arc Chapters sign an affiliation agreement with The Arc of the Untied States to support the values and position statements of the Arc organization. Local Arc chapters contribute input and vote on national position statements. One of the strongest values is that people with developmental disabilities should live full meaningful lives in their communities.

I have put together the following email with information from The Arc of the United States that I think we should share with some of our friends who may not know a lot about The Arc and even those who don’t agree with us. If you have not seen it, please take a moment to watch the short video The Arc of US has developed at the link below.

Thanks, Lance

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The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We encompass all ages and all spectrums from autism, Down syndrome, Fragile X and various other developmental disabilities.

The Arc is driven by opportunity.

The opportunity for hope, for growth, for change; the opportunity for everyone to become a valued, contributing member of their community.

We strengthen people with disabilities, their parents and family members, and dedicated professionals by connecting them across our national network of community based chapters. Our collective voice provides the opportunity for all of us to make a difference.

The Arc fosters respect and access for individuals with intellectual and developmental disabilities and their families, giving them the power to achieve a full and satisfying life.

The Arc of United States Mission Statement:

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

Some of the Arc Values

All people, regardless of disability, deserve the opportunity for a full life in their community where they can live, learn, work and play alongside each other through all stages of life.  People with intellectual and/or developmental disabilities¹ need varying degrees of support to reach personal goals and establish a sense of satisfaction with their lives.

All people with intellectual and/or developmental disabilities have a right to live in communities of their choosing and be fully included with people who do not have disabilities.  Children belong with their families.  Adults should control where and with whom they live, with increasing opportunities to rent or buy their own homes.

Please take a moment to watch this short video about The Arc organization:

http://www.youtube.com/watch?v=fBHq0X_J4ak&feature=player_embedded

For National Arc position Statements that local Arc Chapters support please visit:

http://www.thearc.org/page.aspx?pid=2346

Hi, My name is Sara Lee McQueed.  I am an advocate, client and board member of The Arc of King County.  On Wednesdays during the legislative session, advocates and staff from The Arc go down to Olympia to talk with our State Representatives about issues concerning people with disabilities.  The issues that I been working on are Medical Personal Care, and making sure that the cuts we receive are going to be small.

I also feel like it is better for people to live in the community with assistance rather than living in institutions.  Living in the community is more cost effective than living in an institution.  I feel like every individual, at some point, should be able to have the choice to live in the community.  It is more expensive to put your son/daughter in a institution rather than having them live in the community.

Thank you,

Sara Lee McQueed

I am worried that this basic foundation, on which our society is built is being undermined because we have shifted towards the perception that indeed “I” live on an Island and “I have to have what I need and the others with whom we share our community become invisible.  The grab to keep what is mine without regard to the way in which I am interdependent with others robs our lives of meaning and connection.   The truth is that we are a part of a huge organic and highly interdependent living world.   When I buy something that someone else made, I support their activity, their economic security and, through taxes paid for that item, contribute to the health and economic security of the whole society.  I want my neighbors and seniors and people with disabilities cared for and living a decent quality of life.  I want all our kids to get a great education and have opportunities – not just my kids – but all kids.   We decided as a society at some point that this was an important building block for us all.

I fear we have become stingy and self-centered as a society.  Our character as a society IS reflected in how we act collectively.  We don’t want to pay taxes on much of anything anymore with little grasp of the magnitude of that decision and how it truly will impact us.  At the very very least – we will all have neighbors and friends who lose their livelihoods because of state budget cutbacks,  our children (all of them) will not get what we want for them in our schools,  our work force will be undermined and poorly educated, our seniors and people with disabilities will have less than the very little they had to start with.  What does that say about all of us together?  I think it reflects poorly on us all and all of us will suffer even if we try to hold onto what is ours alone.