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Did Your Newborn Suffer Cerebral
Palsy or Another Brain Injury Before
or During Labor and Delivery?

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Our Birth Brain Injury Resource Guide

the guide

Get a FREE guide of resources available throughout Ohio to children and families of children who were born with brain injuries.

Our guide can help you build a foundation of knowledge and tools that will help you help your child
now and in the future.

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Respite Care for Parents of Children with Brain Injuries

In the U.S., about 2.5 million people sustain a brain injury every year, many of them children. A majority of people with such disabilities live with their families, who serve as primary caregivers to avoid institutional care and the associated worries and costs.

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Caregiving, however, can be a highly stressful experience. The unpredictability, physical and mental strain and secondary work/relationship stress it can create is often overwhelming for some people. Respite care can reduce the stress by providing services in the home, even if it’s just for a few hours a week.

In Ohio, according to a Family Support Council brief, families desperate enough to find treatment have given up custody of their child. The child welfare and juvenile justice systems are a couple of entities custody may be given to, but neither can provide the health care and other services needed by someone recovering from a brain injury. They simply don’t offer a therapeutic setting and parents forgo the ability to advocate for their child’s rights.

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Reinforcing Family Support

Respite care is an option that provides for outside services, but families retain control over support. Children are cared for despite the trauma, losses, challenges, and stigma they face following a brain injury. Family members can encourage them during rehabilitation, but community resources may be available, including support groups and organizations such as the National Brain Injury Association.

The Brain Injury Association of Ohio (BIAOH) provides the contact information and location of local support groups. An advocacy and education organization that operates statewide, it is a foundation for members to find rehabilitation opportunities and support for an individual from the community. The organization focuses on brain injury prevention. It also advocates for treatment and rehabilitation services among the general public, including traumatic brain injury survivors and their family members.

A fully integral family support plan includes:

  • Flexibility to accommodate changing needs.
  • Family-directed control at all phases of the process.
  • A viewpoint representing the family as a primary decision maker and resource.
  • A focus on family-based values, choices, and preferences.
  • Family-chosen resources for emergencies.
  • Coordination with general services.

A support system can include financial relief such as cash payments, reimbursement, tax breaks, or direct payments to help support in-home care. Caring for a child with a brain injury can be frustrating and heartbreaking. Milestones are often balanced with setbacks and daily challenges. Services that may help can include, but are not limited to:

  • In-home training
  • Home/vehicle modifications
  • Planning
  • Counseling
  • Sibling support
  • Behavioral management
  • Education

There is no statewide support system in Ohio, although various groups have advocated for one. Assessing a caregiver’s needs is therefore challenging, and a more effective reimbursement system to family caregivers for their services has been advocated as well. Paying medical bills is a challenge for many, and health problems from stress, strain, and anxiety is a concern.

In fact, there are opportunities to become a certified independent provider. In Ohio, one can obtain certification from Medicaid or the Department of Developmental Disabilities. Certified caregivers must have CPR and caregiving training and receive background checks. Medicaid caregiver pay is an option for many as are a variety of other home care benefits. People who apply can also receive family/caregiver support, medical equipment and supplies, nutrition services, personal emergency response services, and transportation assistance.

Respite Care Services in Ohio

There are several service providers that offer needed care in the state. Dungarvin Ohio, LLC is one of them and offers child and adult day services. Children with developmental disabilities (including those stemming from brain injuries) can receive out-of-home care and in-home services, day services, and youth coaching. Traumatic/acquired brain injury cases are included in the organization’s core services.

Although not based in Ohio, the ARCH National Respite Network offers access to national respite program registries that operate across multiple states. It also provides resources for performance and evaluation, needs assessments, and training. The choices for respite care range from private or county-based facilities to in-home services, depending on the provider. In addition, the network provides information on finding respite providers or programs, including the guidance in its ABC’s of Respite and a tool that allows one to search for respite providers in their state.

Where to Receive Respite Care

Residential respite care isn’t always provided at home. In some cases, the child’s needs demand they be cared for elsewhere. A wide range of services is available from the Ohio Department of Developmental Disabilities, including care in a home-like environment in a number of licensed facilities across the state. It offers a Rental Assistance Program that extends rent subsidies to those with developmental disabilities, but if short-term care for a child is the goal, the Adriel Respite Program serves youth from ages 6-19. This licensed program gives families a break for a day, a weekend, or up to a month. It operates foster homes in 30 counties, where care can be provided on a day-to-day basis.

Adriel is also focused on providing temporary relief to caregivers, either on a planned basis or during emergencies or crises. It is aware of the strain a caregiver can undergo. Therefore, respite care is provided with the goal of sustaining a caregiver’s well-being and preserving the family unit.

If, however, home respite care is the chosen option, it can be coordinated by an outside agency or individual. It’s often the most beneficial choice because the child remains in a familiar environment and parents don’t have to be concerned about them leaving the home. Such homes are typically already equipped to handle their needs. Also, hiring a trained provider is often more economical than care in an outside facility, and families don’t have the burden of transportation hurdles. Home-based respite services are offered in several ways. They may be offered through a:

  • Public health nursing agency
  • Volunteer or private non-profit association
  • Social service department
  • Home health agency
  • Respite program or family trained care providers
  • Companion services trained in caring for children

Therefore, various options are available for respite care. Parents don’t have to go it alone when helping a child with a brain injury recovery, cope, and learn.