1. What can children do if they are experiencing abuse at home?
In collaboration with Puppets in Education, the University of Vermont Children’s Hospital has put together this 9-minute video for children to learn what to do if they are experiencing abuse at home. Dr. Lewis First, chief of the Children’s Hospital offers advice to children. Here is a Summary and Resources and a Letter to Educators. For additional mental health resources, visit our website.
2. Are there any financial assistance programs for families of children with disabilities/special health needs who have been impacted by Covid-19?
The National Organization for Rare Disorders (NORD) has a new program to provide financial assistance to eligible patients, covering up to $1,000 annually. The program provides funds for essential expenses including, but not limited to, unexpected utility expenses; cellular or internet service; emergency repairs to car, home or major appliances; and rent or mortgage payment assistance. Interested rare disease patients and families can contact NORD to find out if they meet eligibility requirements. Call (203) 242-0497 or email [email protected]. NORD also has a rare caregiver respite program offering $500 annually for those who qualify.
3. What can I expect in a Telehealth visit for my child who has a genetic condition?
Telehealth is using technology to connect with a health care provider who is at a different location than you. A Telehealth visit with a genetics provider is called “Telegenetics.” This short video provides information on what to expect from a Telegenetics visit from your home.
A Telegenetics visit is similar to an in-person genetics clinic visit. The genetics provider will ask you questions about medical history and family history. The specific things that happen during a Telegenetics visit depend on why you or your family member were referred for genetic services, and whether this is your first time seeing a genetics provider or a follow-up appointment. Sometimes a physical exam might be needed, in which case a local healthcare provider may help. Your genetics provider may also suggest some genetic testing. This one-page infographic “Telewhat? An Introduction to Telegenetics” provides information on how it works.
The New England Regional Genetics Network has many helpful resources for families.
8. I’m concerned about not being prepared in case of an emergency for my child with special health care needs. How can I feel better prepared?
We are the Vermont chapter of Family Voices, a national organization that has many helpful emergency preparedness resources on their website. Other emergency preparedness resources are on our website.
9. If my family loses health insurance due to a job loss, who should I call?
Your children may qualify for Medicaid, also referred to in Vermont as Dr. Dynasaur. Check this eligibility chart. Children with disabilities might also be eligible for the Disabled Children’s Home Care, also known as Katie Beckett Medicaid. Katie Beckett Medicaid will retroactively cover up to 3 months if there is a lapse in coverage. Contact us or Green Mountain Care for assistance. We can help you with a Katie Beckett application or renewal. You can also take a look at our Health Frequently Asked Questions.