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Further informations about topics addressed are available in favourites, play lists on my channel and complementary video responses. Mirrored: John Devlin, 9/11 first responder Kirk Arsenault, 9/11 first responder join Thom Hartmann. Now on to those who continue to struggle 11 years after the attacks. Im talking about the 9/11 first responders – the police officers, firefighters, and volunteers who rushed to the rubble to look for survivors – and spent days, weeks, and months at ground zero recovering bodies and cleaning up the rubble. Those men and women are today dealing with sickness – unaware at the time that the air they were breathing at Ground Zero was toxic. Cancers, heart problems, and respiratory problems continue to plague the first responders today – and tragically – have led to the deaths of as many as 1000 of these brave Americans. A year and a half ago – Congress passed the James Zadroga 9/11 Health and Compensation Act – to give sick first responders the healthcare they deserve for serving their nation. It was a hard fought victory just to get the bill passed – as Republicans in the House opposed it – with even Vice Presidential candidate Paul Ryan voting against it. But passing it was just the first battle – the next battle for responders was proving that the cancers and illnesses they suffer from were indeed caused by the toxic rubble at ground zero. Now – there might be some good news. On Monday – the National Institute for Occupational Safety announced
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Albuquerque, NM (PRWEB) July 31, 2012

National Family Voices is a non-profit that supports Family-to-Family Health Information Centers (F2F HICs, or F2Fs) in each of the 50 states and DC. To shed light on Eva Camerons dramatic actions and the complexities of the situation, Family Voices interviewed several people within the organizations network of affiliated, family-run agencies. F2Fs are dedicated to helping families of children and youth with special health care needs (CYSHCN) and disabilities.

Recent news articles in the Chicago Tribune* report that Eva Cameron, whose daughter has the developmental understanding of a two- or three-year old, explained that due to her daughters situation, her family owes $ 12,000 in bills, she lost her nursing job, and her husband’s business has suffered. She indicated she has been rebuffed for more than ten years in her efforts to have her daughter placed in a group home in Illinois. In an interview aired on CNN’s HLN Evening Express***, Cameron stated, When I didnt get the help I needed from Illinois, someone at the church said, Why dont you go down to Tennessee? They have a good healthcare system. HLN Evening Express reported that Cameron told police Tennessee has the number one healthcare system in the United States, especially for disabled teens and adults.

However, Camerons belief is apparently incorrect. When asked whether this perception of Tennessee is accurate, Belinda Hotchkiss, Director of Family Voices of Tennessee, (which is home to the F2F HIC that provides information about available services to Tennessee parents of CYSHCN and disabilities), commented:

No, not by a long shot. In Tennessee, the Developmental and Intellectual Disabilities Program actually has a very long waiting list of 7,000 people. I work with parents whose children have been on that waiting list for five, ten, twelve years. If we had spoken with Mrs. Cameron, we could have provided her with more correct information about the services Tennessee does and does not have to offer.

This story of a desperate and hopeless mother from Illinois, who took her daughter to another state in search of care, illuminates two critical needs and a strange fact:


the need for an adequate system of services to support children and youth with special health care needs (CYSHCN) and disabilities to support children at home and in their communities;

the need for easy-to-find, accurate information for parents about the local resources that are available to them, and to their children; and

the strange fact that each state has its own complex set of laws, regulations, and services for CYSHCN and disabilities and their families.

Another family expert reiterates the need for these family-to-family linkages of relevant and accurate information. Faye Manaster, Project Director of Family Voices of Illinois, The Arc of Illinois Family to Family Health Information Center, commented:

Perhaps if this mother had contacted us and told us about her familys situation, we could have guided and supported her in working with programs and services in Illinois. If she had expressed interest seeking services in Tennessee or any other state, we would have been able to connect her with Family-to-Family staff members in those states, as we do for many families each year. We often advise families seeking to move to another state in order to access better services for their children with special needs to first travel there on a fact-finding mission, using contact information from us, before making their decision.

Manaster went on to explain that many F2Fs lack sufficient staff resources to do as much outreach as theyd like so that the people who need F2F services can find them. She also said that F2Fs often work together to share information that is needed by parents in one state about resources that might be available to them in another. Federal funding for these centers is currently scheduled to expire in May of 2013.

Camerons actions are difficult for many people to understand because it seems impossible to imagine or condone abandoning a child. This extreme choice by an overwhelmed, at-the-end-of-her-rope mother can be better understood by appreciating how difficult it can be for parents to find the critical information they need to access appropriate services and make the most helpful choices for their children. Janis Guerney, Public Policy Co-Director for National Family Voices, is working to secure funding for the F2Fs going forward. She explained:

When parents dont have the information they need about where they can go for services, the children suffer. The Camerons story is a good example. And when the parents dont get accurate information about available services, typically the Medicaid system in the state ends up spending more money in emergency room costs and other interventions that are required when conditions become critical. Again, in some ways this is a good example. Tennessee, and perhaps Illinois as well, has just spent a lot of time and resources to rectify this situation with Eva Camerons daughter, which might have been better spent helping the family find services that met their needs.

F2Fs actually save the state money by providing parents with relevant, timely information and support that prevents crises. If the Federal government does not fund F2Fs beyond fiscal year 2012, more parents like Eva Cameron will likely be unable to find the information or services they need to prevent critical situations.

Please be on the lookout for the second part of this two-part story, also released by National Family Voices on July 31, 2012

Footnotes:

Articles located at ChicagoTribune.com:

1. “Chicago-area mother says desperation led her to abandon disabled daughter in Tennessee: Algonquin woman says she couldn’t cope with 19-year-old’s disabilities or mounting cost of caring for her. But not everyone is sympathetic to her plight.” By Lisa Black , Chicago Tribune reporter, July 23, 2012

2. “Algonquin woman left in Tennessee bar headed back to Illinois: Severely disabled 19-year-old abandoned by mother to be placed in residential facility.” By Lisa Black, Chicago Tribune reporter

July 27, 2012

** News Report on CNN’s HLN Evening Express

“Cops: Mom Leaves Mentally Disabled Teen at Bar,” July 12, 2012, http://www.hlntv.com/video/2012/07/11/mentally-disabled-teen-abandoned-bar







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Albuquerque, New Mexico (PRWEB) July 31, 2012

Christina Andrews is the mother of three children in Memphis, Tennessee. Her three-year-old daughter Kayla has a rare disease called Moebius Syndrome. This condition requires 24-hour skilled nursing care because of a tracheostomy, which allows her to breathe with the aid of a ventilator machine. In Tennessee, the only option for the Andrews family to get this care at home has been to choose to live in poverty in order to qualify for 24-hour nursing paid by Medicaid. Andrews said about Camerons situation:

I cant imagine ever being so frustrated that Id send my child away. But I can understand the level of desperation and frustration a mother can have, where you dont know what to do and where to go.

Cameron and Andrews situations both point out the critical need for more services in both Illinois and Tennessee. Andrews quest has been to find the resources that will allow her to care for her daughter at home rather than placing her in an institution. Some states have opted to allow Medicaid to pay for in-home care for children who need hospital-level care or skilled nursing rather than covering these services only if they are provided in a hospital or skilled nursing facility. This option is known as a Katie Beckett benefit and is nicknamed for a child whose situation paved the way for this type of provision in many places. However, Tennessee does not have a Katie Beckett-type benefit. As a result, when Kayla was born, Christina said she and her husband were faced with five agonizing options to secure Kaylas care:

Institutionalize Kayla. Give her custody to the state. Try to provide 24-hour one-on-one care ourselves (even though we have two other small children and my husband has a life-threatening medical condition himself), and risk criminal charges if something happens to Kayla, God forbid, and she dies. Get a divorce, so our income would be considered separately by Tenncare (Tennessees Medicaid). Or have me stop working, limit my husbands income, step into poverty, and not have enough money to pay our bills. We chose the last option, and now Tenncare is paying for Kaylas nursing care at home. The irony is that caring for Kayla in our home costs the state much less money than it would to care for her in an institution. A recent week-long stay at a hospital was cost over $ 32,000, compared to 24/7 skilled, private-duty nursing at just over $ 7,000 per week. But we live hand to mouth, with a steady stream of creditors calling us, whom we cant pay, and our credit is not even in the toilet, its below in the sewer. I adore my children and the stress sometimes feels unbearable. Still, I can only handle this situation by taking it one day at a time and fighting for change.

Andrews recently spoke at a forum organized by Family Voices of Tennessee and the Tennessee Justice Center, advocating for the passage of a Katie Beckett-type benefit in their state. Family Voices of Tennessee is the Family-to-Family Health Information Center for Tennessee, and the state affiliate of National Family Voices. Such a provision, Andrews said, would allow Kayla continued care at home, while making it possible for Christina to go back to work, pay taxes, and begin digging her family out of the financial hole theyve fallen into over the last three years.

This was the first contact Andrews had ever had with an F2F HIC. She commented:

I wish I had known about this organization when I gave birth to Kayla. Its not easy to find information here about the options for parents of children with special health care needs and disabilities. If the hospital where Kayla was born had connected me with Family Voices, it could have saved me time, worry, and heartache because they would have hooked me up with other parents to talk to right away. Thats what I needed most at that time to talk to someone who would really understand. The hospital cant give out other parents contact information because that would be a privacy violation.

In Indiana, Jennifer Akers 14-year old daughter Grace has the same rare condition as Kayla. Jennifer and Christina met on Facebook through a forum for parents of children with Moebius Syndrome. Jennifer and her family, however, had more options to choose from than the Andrews family because Indiana does offer a Katie Beckett-type benefit to families who qualify. Jennifer said:

At the time of Grace’s birth, both my husband and I were teachers. I was able to leave my job for a while when Grace was an infant. However, my husbands teachers salary was too much to allow us to qualify for the Medicaid services we need for Grace. So we were very fortunate that Indiana has a Katie Beckett benefit that allows us to provide this type of care at home.

Jennifer went on to say that her family is not trying to take unfair advantage of scarce resources.

We just want to provide Grace with the supports she needs to thrive and become a contributing member of society. Allowing us to continue to work also means we can continue to pay taxes.

Jennifer added:

When Grace was born, I felt very lucky to have a great social worker who told us about the services available and helped me get connected to them right away. At the time, there was no waiting list. As budgets tighten, thats no longer the case in Indiana.

Wanting to give back, and help other parents find the information they need, Jennifer and her friend Rylin Rodgers approached Family Voices Indiana in 2005 and began volunteering. She said:

Why should another parent struggle through an unfamiliar system when I can explain it to them in a way they can understand, parent to parent?

In 2011 Family Voices Indiana became the Family-to-Family Health Information Center for that state, and Jennifer was hired as the Project Coordinator, training parents throughout Indiana to help other parents. She commented:

We need an F2F HIC in each state to help local parents because the services are often different in each state. The Katie Beckett benefit is one example.

Ironically, in the location where Eva Camerons story began, Illinois, the Katie Beckett benefit is currently in jeopardy. The state government is considering changes that would drastically reduce the number of parents and children who are eligible. Faye Manaster, Project Director of Family Voices of Illinois, The Arc of Illinois Family to Family Health Information Center, commented:

If the current proposals get put into place many more medically fragile, technology-dependent children will be forced out of their parents homes and into institutions. This will actually cost the state more money, rather than save money, and break up families. So its a no-win situation all the way around. We are working on both a national and a state level to advocate for maintaining the Katie Beckett benefit in Illinois as it currently exists. We also continue to advocate for the more than 10,000 children with developmental disabilities who remain on a waiting list for waiver services.

National Family Voices Board Chair, Ruth Walden summed up these issues in this way:

The Family-to-Family Health Information Centers are critical in giving parents the information they need to make the best choices for their children with special health care needs and disabilities. Making this information available to parents actually saves state and federal dollars. The F2F HICs need to stay funded at current funding levels and ideally receive more funding for outreach so they can connect with more parents who need their services. Likewise, provisions like the Katie Beckett benefit need to be supported at a state and federal level because this offers better services for children, and saves precious state and federal dollars. The federal and state governments are trying to save money but cutting information services for parents and in-home care

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Dominga Delgado can’t get the words of a San Benito teen left paralyzed in a car accident out of her head. “I would never want to see my kids go anywhere else but stay with me… And that’s what I would like for this kid to do… Go home with his family,” Dominga said. We first introduced you to Daniel Olivarez last week on Action 4 News. “I just want to go home,” Daniel said in an interview with Action 4′s Hannah Linn. The 18-year-old, who’s paralyzed from the waist down, can’t go home because his healthcare providers believe substandard living conditions there, with no water or electricity, would interfere with his recovery. But despite his incredible challenges, Daniel has proven to be an inspiration with his faith, belief in family and positive outlook with his future. It’s made Dominga realize what’s really important in life. “I want to Pay it 4Ward because I’ve gotten stuff in my life… And I want to Pay it 4Ward to someone else who doesn’t have it… God’s helped me a lot… And now it’s my turn to Pay it 4Ward,” she said. Domingo Reyna, with the Pronto Prepaid Card, has the Pay it 4Ward prize as sponsor of the weekly program. “This is the actual Pay it 4Ward in action,” Domingo said. “This is what it goes down too… Being able to help somebody… She was able to see this story… She’s reaching out in a way to Pay it 4Ward to somebody that needs it at the moment… So we’re proud here at Pronto Insurance and Action 4 News to give you this 0 to Pay it 4Ward
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Boston, MA (PRWEB) May 22, 2012

Robert Pickering, CEO, today announced the launch of Sparkline Digital LLC, an independent digital marketing agency with a progressive approach to helping clients navigate the dynamic digital landscape with a focus on results.

We launched Sparkline Digital for the sole purpose of providing high-caliber digital marketing services to the organizations that serve as the backbone of New Englands economy, says Robert. These organizations want the strategic leadership and smart in-market execution expected from larger agencies, but might not receive unless placed at the top of that agencys roster. Sparkline has the resources and internal structure that allows us to service client needs in a way others simply cannot.

With core expertise in digital strategy, creative, media, social, web development and analytics, Sparkline Digital serves mid- to large-sized companies looking for a progressive approach to making todays marketing investments more impactful while building towards a long term vision.

Every company that employs an agency is looking for results. Our promise is to be a strong, outcome-focused partner, committed to helping our clients understand and capitalize on the rapidly evolving digital landscape, explains Scott St. Mary, president of Sparkline Digital. And we are uniquely qualified to do so. Our leadership team and supporting staff are recognized by their peers as some of the best and brightest in the industry. They joined Sparkline because they know were building something unique and have played a large part in our early success.

Corporate marketers are relying more on digital agencies, not only for a new website but for a holistic view on how digital programs fit into their overall marketing mix and objectives. Sparkline Digital provides all clients with this unified view not available at many digital shops. The agencys progressive approach is to understand the unique relationship clients have with their customers, and to constantly evaluate in-market campaigns to ensure desired results.

For additional information, please visit: http://www.sparklinedigital.com

About Sparkline Digital

Sparkline Digital is an independent digital marketing agency with a deep understanding of how consumers engage in the fast changing digital ecosystem. Headquartered in Boston, we retain the best and brightest talent in the digital industry. Our team employs strategy, research, media, creative, web development, social, mobile and analytics solutions that enable clients to engage with their target audience during all stages of the customer life cycle. Clients include Nuance Communications, Partners HealthCare, Aspen/Snowmass, and Harvard Business School Executive Education among others. Please visit http://www.sparklinedigital.com and follow us @SparklineD for more information.

Media Contact:

Brittany Billings

bbillings(at)sparklinedigital(dot)com

617-425-7300







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New Left Media is one year old! Help us get to two years. Support independent journalism! Donate here: indiegogo.com (share this link!) We are a two-person documentary production team working out of Yellow Springs, Ohio. Since starting in September 2009, in response to the raucous healthcare townhalls that threatened to derail healthcare reform, our short films have been seen online more than five-million times, and have been featured in whole or in part by the BBC, Bill Moyers’ Show, The Ed Show, Jimmy Kimmel Live!, CurrentTV, GRITv, The Washington Post, Huffington Post, Air America, The Nation, Andrew Sullivan, Dan Savage, Roger Ebert’s Journal, Daily Kos and The Daily Show’s Indecision Blog, among others. We want to continue making progressive documentaries, and continue investigating the rise of Tea Party movement and its particular brand of paranoid and conspiratorial libertarianism. In the past year, we’ve also covered the fight for marriage equality in Maine, the National Equality March, and have been working on a longer series about the need for comprehensive immigration reform. But as full-time students, the significant production costs can be prohibitive. In our first year, we had to borrow a small amount of money to produce our films and to procure some equipment that was needed. This year, we will be losing our access to university equipment, resulting in increased production costs. If we are unable to find a revenue source, we might not be able to continue

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