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Resources for Grandparents Including Those Raising Grandchildren with Disabilities

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Table of Contents

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Kansas Resources

  • A State Fact Sheet for Grandparents & Others Relatives Raising Children -  Across the United States, more than 6 million children are being raised in households headed by grandparents and other relatives as parents struggle with substance abuse, mental illness, incarceration, economic hardship, divorce, domestic violence, and other serious problems. These family members (or “kinship caregivers”) are caring for children both inside and outside the foster care system. This fact sheet provides information and resources to help with the challenges they face. (Requires Adobe Acrobat Reader Download Adobe Acrobat Reader)

  • Relatives As Parents Program - A Program for Grandparents and Other Relatives Serving as Caregivers For Children - Several agencies concerned with the welfare of older adults, children and youth are coming together to begin the Relatives As Parents Program. Referred to as "RAPP", this program will work to help relatives who are raising children; especially as it relates to grandparents raising grandchildren.

Other Resources

  • For Grandparents of Grandchildren with Special Needs - You are a Grandparent!
    Your grandchild has a disability

  • Especially for Grandparents of Children With Asperger Syndrome - If your grandchild has been newly diagnosed, then welcome to the world of Asperger Syndrome. It is a mysterious and sometimes overwhelming world, but it is not one to be afraid of. Even if you are saddened, disappointed or angry about the diagnosis, keep in mind that it’s for the best. The earlier the diagnosis, the earlier the intervention, and the better the prognosis in the long run.

  • The Do's and Don'ts of Planning for your Grandchild with Special Needs. Grandparents want the best for their children and grandchildren. They often give gifts while alive, or make provisions for after their death. Grandparents who are in a position to leave money to grandchildren often want to do something for their grandchild with special needs. They often worry about a grandchild with a disability, who may need additional assets or assistance to enjoy a good quality of life. Grandparents are sometimes told not to leave their grandchild with special needs anything because the child may lose government benefits. People are often confused as to what to do or not do.

  • Grandparents Raising Grandchildren With Developmental Disabilities - Families continue to be the primary caregivers of children and adults with developmental disabilities, with over 60% of the disabled population living with families. Developmental disabilities is defined as a condition that is: 1) attributable to mental or physical impairments (e.g., intellectual disabilities, cerebral palsy, epilepsy, neurological impairment or autism); 2) originates before age twenty two years; 3) is expected to continue life-long; and 4) constitutes a substantial impairment in at least three major functional activities (Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1994 (PL 103-230)). Of these family caregivers, over 25 percent are over the age of 60 years (Fujiura, 1998). Increasingly these caregivers are grandparents who are caring for their grandchildren with disabilities. (Requires Adobe Acrobat Reader Download Adobe Acrobat Reader)

  • Grandparents Raising Grandchildren and Grief by Ron Huxley - Articles and newsletters for Grandparents raising grandchildren

  • Living With Grandparents: An Article for Children

  • National Center for Grandparents Raising Children

  • Online Support for Grandparents Raising Grandchildren - Recently released U.S. Census 2000 figures show that 2.4 million grandparents are single-handedly raising their grandchildren. Many grandparents rearing grandchildren face challenges related to poverty, custody, child care, access to services, medical care, and more.

  • The Role of Grandparents - The role of grandparents in the lives of blind or partially sighted children.

  • Social Security Benefits for Grandchildren - More and more parents are finding themselves raising grandchildren. Social Security will pay benefits to grandchildren if benefits are not payable on the work record of a parent.

  • Tips for Grandparents - When a child is born or diagnosed with disabilities, parents are not alone in their concerns. Grandparents are often anxious, too, not only for their grandchild, but for their child whose life is affected by the baby. Many grandparents and parents have been interviewed to ask how grandparents can best help their children and grandchildren.

  • Welcome to Your Grandparent Raising Grandchildren Resource Notebook - This resource notebook has been designed to provide you with information we hope you will find helpful. For the past several years we have been working on creating a support network for grandparents in Pima County doing the important job of raising their grandchildren. Many grandparents have told us that they did not have the information they needed when they began their job of being a parent the second time around. We hope that the ideas you get from this notebook will let you know that you are not alone on this journey, which is sometimes full of worry and sometimes wonderful.

  • You are a Grandparent and Your Grandchild has a Disability - Most likely, these are words you never expected to hear.  Maybe you have been repeating them over and over to yourself since the birth of your grandchild, trying desperately to understand what they really mean.  You are not alone.  Many grandparents who have grandchildren born with a disability go through the same wrenching process.

Contact the Families Together Center near you for more information

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