Parents and Families

Parents and Family

When an infant or young child is diagnosed with a disability, the family’s lives are changed forever. Confronting and living with the challenges brought about by disability requires families to draw upon strengths within themselves that they often did not think existed. Parents and families must adjust to a life different than they imagined. The ability of the family to meet these challenges is determined, in large part, by the support that is available from other immediate family members, grandparents, relatives, friends and co-workers. Equally important are the supports and services that the family and child receive from the educational and other social service agencies.

Disability is often apparent at birth. An infant is diagnosed, usually by a physician, at the hospital. Some children are diagnosed later after they fail to meet certain developmental milestones. Thanks to advances in technology and greater understanding of disability, children with disabilities are being identified during their very early years and can get services much earlier in life.

Services for children with disabilities are mandated from birth to 21 under the Individuals with Disabilities Education Act (IDEA). IDEA requires that families be involved with the planning, development and implementation of services throughout a child’s life.

Children with developmental delays or disabilities ages 0-3 are eligible for Early Intervention Services under IDEA. Intervention is vital during this very early time.

Learn more about early intervention and educating kids with disabilities by contacting your UCP Local Affiliate. If you can’t find a local UCP affiliate in your area contact us at 800-872-5827 or via e-mail to info@ucp.org. We are here to help!

Caregiving

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.

National Family Caregiver’s Association

NFCA educates and advocates for those who care for someone with a chronic illness, disability, or advanced age.

National Alliance for Caregiving

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.

Contact your UCP Local Affiliate  regarding caregiver support programs, respite care or respitatlity programs in your community. Contact UCP Information & Referral via telephone or email

if you are not able to locate a UCP affiliate in your area.

Family Support

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 VoicesFamily 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 ParentParent to Parent is a network providing emotional and informational support to families of children with disabilities.

Find a UCP affiliate near you!

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