Children In Nursing Homes: Truly The Most Vulnerable

Many families are forced to institutionalize their disabled children in nursing homes because of many states don’t have the resources to pay for in-home care. This puts parents in the difficult position of funding expensive home care on their own or having their child live in a nursing home, surrounded by elderly adults, and many families simply cannot afford the cost of in-home care workers and nurses. The Centers for Medicare and Medicaid Services estimates that about 4,000 children live in nursing homes in the U.S. and that number is steadily growing as health care resources are increasingly spread thin.

Thousands of children with disabilities end up living in nursing homes because of insufficient coverage for in-home care by state governments and a shortage of skilled home care workers. In 2000, the Centers for Medicaid and Medicare Services estimated that 4,886 children lived in nursing homes; of these children, 1,222 suffered from mental retardation or a developmental disability. 

Medicaid guarantees long-term care for all people with disabilities, including children. However, many disabled children, who would be adequately served by proper in-home care, end up in nursing homes despite higher costs for nursing home care than in-home care. 

The University of Minnesota Research and Training Center on Community Living reported that home and community care cost about $26,000 per year while the state of Georgia spends about $81,000 per year on each patient in nursing homes. Although some federal and some state funding has been increased to help remove disabled children from facilities with four or more disabled persons (congregate settings), the number of institutionalized children has remained largely unchanged. 

Many disabled children end up in nursing homes because of insufficient state resources. About 93,000 special needs people are on waiting lists for home and community based services. However, there are not enough skilled nurses, therapists, and home health care workers to support the people who most need their help. In many cases, the family’s private insurance won’t cover the cost of medical equipment, and in-home nursing and therapy. This leaves many families with only one choice, nursing home care. 

Most nursing home care is focused on older adults because elderly residents constitute the majority of the resident population. As expected, treatment and health concerns differ for older adults and children. Also, children often spend more years living in nursing homes than the elderly adults they are surrounded by because of the age difference. This means more years spent living in a nursing home, away from their family, usually costing Medicare more money than if the child were able to live at home receiving in-home support services. 

However, until states step up funding to improve in-home care resources, these children will remain stuck in nursing homes, hardly a suitable environment for most children, especially when their families would prefer them to be living at home. 

Nursing Homes, Group Homes & Day Care Facilities Responsibility To Care For Children

The foreign environment of a nursing-home-world created for adults, leaves many children at risk for abuse and mistreatment at the hands of caregivers and other patients.  I have successfully prosecuted cases on behalf of many of these children and young-adults in the following types of cases:

Working side-by-side with some of the most respected authorities on the long-term effects of abuse on young people, we have successfully secured money to provide for the future.  Many of the sexual abuse and molestation cases we work on can be resolved prior to the filing of a lawsuit, in a confidential manner-- with minimal impact on the individual. 

If you believe a young person suffered from an injury, abuse or neglect in a nursing home, foster home, day care, group home or any other structured setting, we would honor the opportunity to speak with you.  As always our services are free if we do not recover on your behalf. (888) 424-5757

Resources:

Medical News Today: Wall Street Journal Examines Nursing Home Care for Children with Disabilities

VirginiaSpecialNeeds.com: Thousands of Children with Special Needs Are Living in Nursing Homes 

Research and Training Center on Community Living: Number of Children in Nursing Homes 2002

Wall Street Journal: Babes Among Elders, Nursing-Home Kids

Related Nursing Homes Abuse Blog Entries:

Alden Village North Charged With Neglect After Child Dies Due To Inadequate Nursing Care

Home Care Nurse Has License Suspended In Connection To Death Of Disabled Boy

Respite Care: A Welcome Break For Caregivers Or Exposing A Loved One To Unnecessary Harm?

Respite Care means the intermittent and temporary care for frail or disabled adults on behalf of the primary caregiver in order to provide relief and support. It is an important aid for families who care for older family members so that they can run errands, work, take care of personal matter, or even give them some time off to relax. This allows you to care for family members without having to institutionalize them. 

Caregiving requires large amounts of time, emotion, and money. It can be very stressful, which can lead to situations of abuse, neglect, financial exploitation, or even feelings of resentment. This is why having programs that offer respite care are so important to ensure that you give your family members the care they deserve while allowing you some time to yourself. 

Respite care comes in many forms; it can be managed through national organizations such as The Arc, Easter Seals, and United Cerebral Palsy, provided by local organizations such as churches, schools, and non-profits, or even arranged with neighbors or people the family knows. The services provided depend on the provider, the needs of the family, and available funds. In addition, respite care can be planned or provide emergency relief to the caregiver. 

In-home respite care means care provided by a trained paid worker providing short-term intermittent care, supervision, or companionship to the frail or disabled adult in the home while relieving the caregiver. In-Home respite care can consist of:

  • Home-based services
  • Sitter-companion services
  • Parent-trainer services

Out-of-Home respite can consist of:

  • Family Care Homes
  • Respite Family Day Care
  • Respite in Corporate Foster Home Settings
  • Residential Facilities
  • Parent Cooperative Model
  • Respitality Model
  • Hospital-Based
  • Camps

It is important that respite care workers receive proper training in order to provide quality care and assistance to your elderly or disabled family members. Elderly persons are at risk for abuse, neglect, and financial exploitation, which makes it even more important to take care when choosing respite care workers. You must have peace of mind when leaving your loved ones with a respite care worker, so you know that they are receiving 

In Illinois, the Respite Program Act (320 ILCS 10) acknowledges the importance of respite care and helps provide affordable and appropriate in-home respite care services. The Director of the Illinois Department on Aging (IDOA) is in charge of administering a program of assistance to persons in need to deter the institutionalization of frail or disabled adults. The Act provides that respite care workers should be appropriately trained to provide in-home supervision and assistance to a frail or disabled adult. 

As part of the 2000 National Family Caregiver Support Program, Illinois was given $4.7 million to develop the Caregiver Support Program, part of which is intended to lead family caregivers to respite care to enable them to be temporarily relieved from their caregiving responsibilities. There are Caregiver Resource Centers (Region 12 – City of Chicago) across the state which can help you located services. In 2009, the Illinois Department on Aging received a $200,000 federal grant to improve the state’s respite programs.  Also in 2009, the IDOA implanted its three-year Lifespan Respite Project in collaboration with the Illinois Respite Coalition and other state and private organizations in order to improve respite care by establishing a statewide listing of respite services and train respite providers and volunteers. 

Deciding whether or not to institutionalize a family member is a difficult and personal choice. If you do decide to offer care to an elderly or disabled family member in your home, there are respite care programs that can offer much needed relief and support. 

As lawyers who frequently represent the elderly, I see many individuals mistreated or neglected in a respite-care-setting.  The majority of the time we see an injury occurring in these situations, is probably due to an unfamiliarity between the temporary caregiver and the patient. 

In order to make respite stays as easy on the facility and the individual, I suggest the following:

  • Visit the respite care facility on your own and with your loved one (if possible) before the respite visit
  • Make sure the facility regularly handles respite care stays
  • Try to be consistent with the facilities or individuals you use for respite care
  • Communicate your loved one's needs to the staff
  • Bring photos or other familiar keepsakes to the respite care facility
  • Don't hesitate to make a brief phone call to check in during the respite stay

Sources:

ILGA: Respite Program Act

DHHS: Respite Care

Illinois Department on Aging: Caregiver Support Program

Administration on Aging: Lifespan Respite Care Program