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The financial toll of caregiving on special needs families

American families provide around 1.5 billion hours of unpaid at-home care to about 5.6 million special needs children each year, according to the findings of a nationwide study. This represents a substantial economic cost of an estimated $36 billion in unpaid medical care annually.

Family members assist special needs children at home with everything from feeding and tracking medication to performing physical therapy and changing bandages. These health care tasks can be time-consuming and even highly technical at times.

The study found parents and guardians provide an average of 5.1 hours of medical care to a special needs child each week. For children with conditions like cerebral palsy and muscular dystrophy, the number of hours doubles. However, those figures do not include additional time caregivers spend helping children with daily activities like bathing and dressing.

Researchers say caregiving takes a toll on the ability of parents to earn a living. Families forgo nearly $3,200 in earnings each year per child due to medical caregiving responsibilities. While home health aides are available to provide care, hiring them is often not a feasible option for many families as they can cost up to $6,400 annually per child.

Beyond financial challenges, researchers noted that caregiving responsibilities can also cause emotional stress. “Parents want to do everything they can for their children, but it can be a real challenge to juggle their ill child, their other children and sometimes their job,” said Mark Schuster, general pediatrics chief at Boston Children’s Hospital and senior investigator on the study.

Schuster suggested family caregivers need to be given more training and support. The researchers and his colleagues recommended paid family leave programs, improved care coordination, more communication with the child’s medical team and home visits by clinicians as strategies to help at-home care providers of special needs children.

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National Institute of Justice funds research to prevent elder abuse

Seniors can be vulnerable to many forms of elder abuse, whether it is financial exploitation or physical abuse. While elder mistreatment is known to occur, it is also a problem that often goes unreported.

The Department of Justice’s National Institute of Justice (NIJ) is hoping to change that. It recently awarded around $800,000 to the University of Southern California (USC) and the Urban Institute to develop elder abuse prevention programs focusing on financial exploitation and neglect.

The awards are part of NIJ’s efforts to identify ways to prevent and detect elder abuse and determine which solutions are the most effective. The research involves establishing a planning phase for an Elder Abuse Prevention Demonstration Project.

“There is no age limit on victimization,” said NIJ Director Nancy Rodriguez. “These awards are another step toward enabling evidence-based approaches to protect our elderly from abuse and neglect, while also holding accountable those who exploit and victimize our seniors.”

Investing in research is a key part of developing protections for the elderly. The Urban Institute will conduct an 18-month study with at-risk seniors in Maricopa County, Arizona. The findings will then be published in a manual containing information about implementing its elder abuse prevention program in other locations.

The USC will use the $400,000 awarded by the NIJ to create an elder mistreatment intervention program. The program will be based on the insights gleaned from studying domestic violence, child abuse and other forms of family violence. The funds will enable the university to launch phase one of a three-part project in collaboration with stakeholders and health professionals. Adults aged 65 years and older will participate in the first phase of the project.

“Preventing elder abuse has long been our objective,” states Palo Alto, California, elder law attorney Michael Gilfix. Gilfix offers creative approaches to focus on prevention, rather than addressing abuse after it occurs. For more information see the article titled, “Addressing Financial Elder Abuse: Should the bar for protective intervention be lower?” written by Michael Gilfix in September 2014.

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