Senate Passes National Family Caregiver Support Program

Earlier this week, the Senate passed the Older Americans Act (OAA). This bill contains the eligibility fix for the national family caregiver support program that will now include older relative caregivers (aged 55 and over) of their adult children with disabilities (aged 18-59).

The National Family Caregiver Support Program was the first federal program to recognize the needs of the nation’s family caregivers who provide the vast majority of long-term services and supports. This program not only funds respite, but individual counseling, support groups, and caregiver training for family caregivers, primarily for those who are caring for the aging population.iStock_000013039002Small

With the increasing number of Americans who are caregivers of their adult children with disabilities, we are thrilled to see this improvement in the program. There are over 800,000 caregivers of persons with intellectual and developmental disabilities (ID/DD) who are over the age of 60. This number is projected to grow substantially with the aging of the “baby boomer” generation. People with intellectual and developmental disabilities are also living longer due to medical advances. As parents of these individuals age, they will require more support to be able to continue providing care to their adult children and avoiding costly and unwanted institutional placement.

More than at any other time, when Medicaid, Medicare, and Social Security are being threatened, helping family caregivers to continue providing long-term services and supports is good public policy.

The National Family Caregiver Support Program and the Older Americans Act have been on our radar as they have direct impact for improving and securing a life with out limits for those living with disabilities and their families.

Call Your Member of Congress and tell them how thankful you are for the passage of the National Family Caregiver Support Program and the Older Americans Act!

To help guide your call, we have put together a list of talking points.

 

 

My Brother Kain

Today is National Siblings Day, which celebrates siblings of every stripe, everywhere. However, for people with disabilities, the sibling relationship is often quite different than what is experienced by those who have brothers and sisters without disabilities. Yes, there’s love, and yes, there’s sometimes rivalry and tension. But so often the bond seems to go far beyond what you would expect of typical siblings. Siblings of people with disabilities are frequently the ultimate protectors, caretakers and friends, with a connection not always explained by simple family ties. Guest blogger and sibling Ashley Knapp is all of those things. We thank her for choosing to give us a glimpse into the world she shares with her brother. 

 

My younger brother Kain was born when my mother was 26 weeks pregnant. He had a rough time and was on a ventilator for the first 4 weeks of his life. His lungs hadn’t had a chance to develop, and the lack of oxygen caused his Cerebral Palsy. His retinas also detached causing him to lose his vision, leaving him completely blind. He also has a rare condition called contaminated bowel syndrome.

Ashley and Kain

Ashley and Kain

My bother has had hundreds of surgeries in his lifetime, which is hard to believe. However, he still wakes up with such a huge smile on his face every single day. My mother, Erica, always tells of how although my brother is barely verbal, as soon as he wakes up he is yelling my name. We have a bond like no other, and nothing will ever be able to get in the way of that.

At 18, immediately after graduating from Belmont High School in Dayton, Ohio, I left for the United States Army to Fort Leonard Wood, Missouri for boot camp. It was one of the hardest things I had ever chosen to do in my life. I had never been away from my family before, and kept pictures of them in my bible that I got to look at during our personal time

Ashley's brother, Kain

Ashley’s brother, Kain

and before I went to sleep. It wasn’t long before I was assigned to my first duty station at Fort Drum, New York.  At nearly 10 hours away from home, it was hard being away from my brother. The first year away, I sent him a ‘record yourself’ book so he could hear my voice every night. After a few years in the military, it was time to change my life path and I returned to Dayton, Ohio, where I still currently reside. I have started pursuing my

music career. Now I get to sing to him and watch his smile, with those big dimples, whenever I want and I love it. I love my brother. We have a bond like no other, and I wouldn’t trade it for anything in the world.

New Report Highlights Importance of Parent-Provider Partnerships for Children with Disabilities

A new clinical report from the American Academy of Pediatrics explores the multi-faceted issues and needs faced by families of children with disabilities such as health care services, social and financial support, care coordination,and transition services–and how these families can best be served.

Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities explores the challenges of developing effective community-based systems of care and offers suggestions to pediatricians and policy-makers regarding the development of partnerships among children with disabilities, their families, and health care and other providers to maximize health and well-being of these children and their families.

Thinking About Moving? Check Out Schools and Services Before You Move

Moving is challenging for any family but particularly so for families of children with special needs. Whether the move is within the state or across the country, the services provided will vary. Be sue to investigate the school systems and health and social service system landscape before you move. The following articles provide more tips and information.

Moving to a New Location from the National Dissemination Center for Children with Disabilities 

Want to Find a Special Education Program That Meets Your Child’s Needs Before You Move? Go Shopping from WrigthsLaw

Toolkit for Parents of Children with Epilepsy

The Epilepsy Foundation released a new publication, Epilepsy and My Child Toolkit: A Resource for Parents with a Newly Diagnosed Child

The Toolkit is designed to be a resource guide and information referral source and includes forms to help parents organize medical and educational information, take notes, and facilitate communication between all parties involved in the child’s care.