According to estimates from the National Alliance for Caregiving, during the past year, 65.7 million Americans (or 29 percent of the adult U.S. adult population involving 31 percent of all U.S. households) served as family caregivers for an ill or disabled family member. Research indicates that caregiving exacts a heavy emotional, physical and financial toll. Many caregivers who work and provide care experience conflict between these responsibilities.
UCP affiliates understand the issues caregivers experience and are readily available to provide respite care and more.
To help you in your journey as a caregiver, we offer the following list of organizations that provide information and support.
NFCA educates and advocates for those who care for someone with a chronic illness, disability, or advanced age.
The National Alliance of Caregiving offers free studies and brochures on caregiving and hosts a searchable database of articles.
What Is Respite Care?
Respite, a break for caregivers and families, is a service in which temporary care is provided to children or adults with disabilities, or chronic or terminal illnesses, and to children at risk of abuse and neglect. Respite care can occur in out-of-home and in-home settings for any length of time, depending on the needs of the family and available resources.
Finding someone qualified to care for your loved one can be overwhelming. The care of a family member with multiple and severe physical disabilities is a 24-hour-a-day commitment. Most often respite care takes place in the families own home where professional care-givers provide an opportunity for parents to have some time to themselves to shop, to visit the dentist or doctor, or to spend time with other children or a spouse.
In addition to providing direct relief, respite has added benefits for families, including:
- Respite gives families peace of mind, helps them relax, and renews their humor and their energy;
- Respite allows families to enjoy favorite pastimes and pursue new activities;
- Respite improves the family’s ability to cope with daily responsibilities and maintain stability during crisis;
- Respite helps preserve the family unit and lessens the pressures that might lead to institutionalization, divorce, neglect, and child abuse;
- Respite allows families to become involved in community activities and to feel less isolated;
- Time Off. Respite allows families to spend time together and alone; and
- Respite makes it possible for family members to establish individual identities and enrich their own growth and development.
Additional support can come through a Respitality program, which offers a well-deserved break to parents from the constant challenges of childcare. The Respitality program combines respite services with quality hospitality services. Families benefit from the generosity of hotels and restaurants that provide free accommodations and a meal for two, during a 24-hour getaway. This “mini-vacation” weekend can mean so much to families–it has really allowed them to rejuvenate and refresh themselves so that they may return to their families with a brighter outlook.
if you are not able to locate a UCP affiliate in your area.
Support is very important to a family’s mental and physical health as well as its ability to cope. That goes double for individuals and families with disabilities, where support then becomes a critical issue. Families with disabilities are not just dealing with young children with disabilities. It affects people of all ages and all members of the family. As baby-boomers age, families may be dealing with cross-generational support issues.
Family Support Links
Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs.
Parent to Parent is a network providing emotional and informational support to families of children with disabilities.
Children with disabilities aged infant to 21 are entitled to educational services under the federally mandated Individuals with Disabilities Education Act (IDEA). which ensures that all children with disabilities have available to them a “free appropriate public education” that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.
Infants and toddlers with developmental delays or disabilities ages 0-3 are eligible for Early Intervention Services under the IDEA. Learn more about Early Intervention.
Starting at age three, Individualized Education Programs (IEP) are developed for children. An IEP is a written statement of the educational program designed to meet a child’s individual needs. The IEP focuses on long term goals and objectives which are determined by an assessment and evaluation. A multidisciplinary team, including the child’s parents, develops the IEP. If a child needs a related service (e.g., occupational therapy, language therapy) to receive a free appropriate public education, it must be provided at no cost to the parents.
Each state has at least one federally funded Parent Training and Information Center that provides information, training, and advocacy to parents concerning their child’s right to a free appropriate public education.
Other Helpful Resources
Complete information from the U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA) website.
A parent’s guide to creating a plan for a child’s education, known as the Individualized Education Program, or IEP.
Provides Parents, educators, advocates, and attorneys with accurate and reliable information about special education law, education law, and advocacy for children with disabilities.
CADRE works to increase the capacity to resolve special education disputes through mediation. CADRE works with state and local education and early intervention systems, parent centers, families and educators to improve programs and results for children with disabilities.