Family Voices National is partnering with Genetic Alliance and Parent to Parent USA (P2P) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families, or others. We are developing an online toolkit and would like to include a personal story that demonstrates the importance of advocacy in each of several topic areas.
Summer is only two months away, in spite of the foot of snow that fell over northern Colorado yesterday. If you’re looking for camps, playgrounds, trails, or sports for children with special needs, we have information for you!
April is Autism Awareness Month, and with the recent and rapid increase in the rate of autism diagnosis (as many as 1 in 50 children are affected by the disorder), we want to highlight some resources available for families, professionals, and community members.
Training & Resources: Webinars to increase family leadership, Parent Support Provider certification, and the Bright Futures Family Network.
Advocacy groups share feedback from consumers about what features are important in the new Colorado Health Benefit Exchange; the Colorado Consumer Health Initiative is looking for real people’s stories of health insurance challenges; and upcoming events for families and professionals.
Early Intervention services can help children overcome early delays and improve long-term health outcomes. Yet the National Survey of Children’s Health found that in the past year, 4 in 5 young children did not receive age-appropriate screening for developmental, behavioral, and social risks and delays, leading to missed opportunities for early intervention and advancing school readiness.
The Medicaid Buy-In Program for Children with Disabilities (Children’s Buy-In) allows eligible working- and middle-class families to pay a low monthly premium to ‘buy in’ to Medicaid benefits. Family Voices Colorado helps families of children with special health care needs understand their options and apply for the Buy-In, so that more children have access to affordable, quality health care.
Colette thought her professional background had prepared her to work with the system on behalf of her daughter, but she found she needed help along the way, and Family Voices was there to walk with her. Colette shares why she is thankful for Family Voices Colorado this month.
Help improve family-centered care by providing feedback on the REVISED Family Voices Family-Centered Care Assessment for Families (FCCA) questionnaire. This questionnaire allows families to evaluate the quality of the family-centered care they receive from their health care providers.
Read the story of the Hogarth family, whose seven-year-old son, Jake, has Angelman Syndrome, a genetic disorder involving significant developmental delay, seizures, movement and balance problems and behavioral issues. Though Jake was covered by both parents’ private insurance plans, his family faced out-of-pocket expenses in the range of $1,000-$1,500 each month.