The United States at the present time is wrestling with the formulation of its policy towards its millions of chronically disabled youngsters. The debate will grow louder with each passing year as the number of such infants increases both in absolute terms and as a percentage of the total population.
Large numbers of youngsters who have birth defects or suffer other problems are being housed in hospital intensive care units. These children owe their lives to new life sustaining technology. It is doubtful that many of them would have survived five to ten years ago. Some of them have been in hospital ICUs continuously for several years.
It is the same wonderful new technology to which they owe their very lives that has kept them dependent on hospitals, which until now, was the only place where life sustaining equipment and trained personnel were available.
Tremendous change has occurred these past few years in care options for chronically ill children. The refinement of technology and greater numbers of trained health care professionals in the care and special needs of this population have made it possible to move large numbers of these disabled youngsters from hospitals back into their homes.
Pediatric home care is truly an idea whose time has come. Pediatric home care has numerous advantages. In just about every case, parents prefer to have their children at home with them and often, it is better for their kids. Second, it is in the interest of society to keep families together. Third, it is a more humane option.
The phenomenon of large numbers of chronically impaired youngsters is new to America. This poses an enormous number of complex social, political and ethical issues.
One of the missions of the National Association for Home Care and Hospice is working to inform the public, Congress and the media on these complex issues; and point to the best possible solutions.
Much research is still needed, and we do not have all the answers. But the best data available indicates the following:
• Approximately 20 million children are afflicted with a chronic illness or disability in the United States, of whom about one million would be considered severely impaired.
• Eleven of the most common chronic illnesses among children are: juvenile-onset diabetes, muscular dystrophy, cystic fibrosis, spina bifida, sickle cell anemia, congenital heart disease, chronic kidney disease, hemophilia, leukemia, cleft palate and severe asthma. It is not uncommon for a child to suffer from multiple disabilities.
• Until recently, these children have had little choice but to live in institutions. The cost of their care has been enormous. It is estimated that children with the eleven diseases above make up roughly 40 percent of all hospital days used by children.
• Children also make up a disproportionate percentage of the nation’s accident victims. When they are added to the total, it is possible to reach the conclusion that children with birth defects or disabilities caused by accidents, account for half of all children’s hospital expenses each year.
• Many of these children could be cared for safely at home by the people who love them the most – their families. New technology, which can be less costly, and the help of trained medical personnel can bring these children home.
The National Association for Home Care & Hospice will continue to push hard for changes so that insurance companies and programs such as Medicare and Medicaid look to keep children home. After all, there is no place like home.
Val Halamandaris, President of the National Association for Home Care & Hospice (NAHC), has been the driving force behind the association and other home care-focused organizations for more than 40 years. He is also founder and director of The Caring Institute, a non-profit organization that nationally recognizes stellar caring, integrity and public service.
Prior to NAHC Halamandaris was on the House of Representatives Select Committee on Aging, where he was senior counsel and director of oversight. The Honorable Claude Pepper was chairman of the committee. Prior to joining the House Committee staff in 1978, Halamandaris was associate counsel to the US Senate Committee on Aging between 1969 and 1978. From 1962 to1969 he worked with US Senator Frank E. Moss, who was instrumental in the founding of the Senate Aging Committee in 1961.
Halamandaris won nationwide recognition for his role as a congressional investigator and his efforts to expose fraud against the elderly. He is best known for the hard-hitting congressional investigations he directed into insurance fraud, medical quackery, real estate fraud, nursing home abuse, and other scams victimizing the elderly.
For more information, please visit the company Web site:
Public Relations Contact: Rosica Strategic Public Relations