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. grandmabw1

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


ILGA: Respite Program Act

Illinois Department on Aging: Caregiver Support Program

For more information on nursing homes in Chicago look here. For laws related to Illinois nursing homes, look here.

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