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Disabled children need schools and services that are right for them. Parents need access to respite care and other support. More than half a million UK families face a daily challenge to get support for their disabled child. The current lack of local services and respite care makes it much harder than it needs to be. Scope are campaigning to change this. In this film for Scope’s Keep Us Close campaign, we meet Jane Jones and her son Jacob, who has hydrocephalus (also know as “water on the brain”), autism and a learning disability. She talks about the challenges her family faces on a daily basis as they try to get the right support for Jacob locally. Scope’s Keep Us Close campaign is aiming to get a guarantee of better support for disabled children and their families in their local area. The Government is putting a new Children and Families Bill through Parliament that will say what happens in England. The Welsh Government is also writing a new Bill to reform Special Educational Needs in Wales. We’re campaigning to get these Bills to include such a guarantee. If you’d like to find out more about how to support the campaign, click on the following link: www.scope.org.uk Scope is all about changing society for the better, so that disabled people and their families can have the same opportunities as everyone else. www.scope.org.uk

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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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www.freemedicineassistance.com -As millions of Americans strive to deal with the economic downturn,loss of jobs,foreclosures,high cost of gas,and the rising cost of prescription drug cost. Charles Myrick ,the President of American Consultants Rx, announced the re-release of the American Consultan…
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Family Service Inc. Receive Tribute & Health Care by Charles Myrick of ACRX

www.americanconsultantsrxinc.net -As millions of Americans strive to deal with the economic downturn,loss of jobs,foreclosures,high cost of gas,and the rising cost of prescription drug cost. Charles Myrick ,the President of American Consultants Rx, announced the re-release of the American Consultants Rx community service project which consist of millions of free discount prescription cards being donated to thousands of not for profits,hospitals,schools,churches,etc. in an effort to assist the uninsured,under insured,and seniors deal with the high cost of prescription drugs. .The American Consultants Rx discount prescription cards are to be given free to anyone in need of help curbing the high cost of prescription drugs. Due to the rising costs, unstable economics, and the mounting cost of prescriptions, American Consultants Rx Inc. (ACRX) aka (ACIRX) an Atlanta based company was born in 2004. The ACRX discount prescription card program was created and over 25 million discount prescription cards were donated to over 18k organizations across the country to be distributed to those in need of prescription assistance free of charge since 2004. The ACRX cards will offer discounts of name brand drugs of up to 40% off and up to 60% off of generic drugs. They also possess no eligibility requirements, no forms to fill out, or expiration date as well .One card will take care of a whole family. Also note that the ACRX cards will come to your organization already pre-activated .The
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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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Parents are right to consider what is safe for their children, especially when it comes to vaccines. With the current news and discussions surrounding immunizations, many parents are concerned about the safety and number of vaccines that are recommended or required for infants and for school-age children. It is important to use reliable sources for science-based information when looking at the safety of immunizations. The science behind childhood vaccines has shown these vaccines to be safe and effective for infants and children. The risk for a child getting sick with a vaccine-preventable disease is far greater than the risk of being vaccinated. Today, parents may not have seen cases of these childhood diseases, but they can be very dangerous. Most, including Haemophilus influenzae type B, better known as HIB, Pertussis, and measles, are still infecting children in the US today. Your health care provider or health department can discuss with you all the benefits and risks of any vaccine. Years of safety and special reporting procedures after vaccination, have given scientific proof that vaccines reduce the risk of getting disease. Many diseases spread very easily, so immunization helps protect against spreading the disease to other members of the household and even to the community. It’s important to remember that the number of vaccines a baby receives is small, compared to all the viruses and bacteria a baby can be exposed to every day. The best protection from
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Preventive Care for You and Your Family

Preventive care including blood pressure screenings, vaccinations for kids, counseling for teens, and more may be covered without copays or out-of-pocket costs. Under the health care law, many insurers are required to cover certain preventive services at no cost to you. Visit www.HealthCare.gov to learn more and sign up to receive email updates from HealthCare.gov: public.govdelivery.com — HealthCare.gov Take health care into your own hands. US Department of Health and Human Services (HHS) http We accept comments in the spirit of our comment policy: newmedia.hhs.gov HHS Privacy Policy www.hhs.gov
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