May 7, 2020

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 COVID19assistance@rarediseases.org. NORD also has a rare caregiver respite program offering $500 annually for those who qualify.

The HealthWell Foundation is offering grants up to $250 to assist qualifying applicants with costs associated with delivered food, medication, diagnostics, transportation and telehealth as a result of COVID-19 risk or incidence. Applications are only accepted by phone by calling 1-(800) 675-8416.

The Covid-19 Resource Relief program through Laughing at my Nightmare is to provide financial assistance to individuals living with any disability, diagnosis, or chronic illness to help alleviate the burden of the coronavirus-related quarantines and social distancing practices. This assistance is provided in the form of one $100 Visa Gift Card to be used for food, hygiene products, and other living expenses associated with self-isolation and quarantine.

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 including some specifically about Covid-19.

4. What resources are available to siblings (age 13+) of a child with special health needs?

Siblings of a child with special health needs who are age 13+ can connect with other teenaged sibs on SibTeen, a closed Facebook group co-hosted by the Sibling Support Project. There are also many books available for siblings of children with a range of special health conditions; check your local library’s ebook offerings. Siblings age 6+ are invited to our last “virtual” Sibshop of the school year on Saturday, May 16 from 1- 2:30 pm. To register, or for any other questions about supports for siblings, please contact Molly.Lawney@vtfn.org.

April 17, 2020

1. Can I be with my child who has a special health need/disability if they are in the hospital emergency room and/or are admitted to the hospital? 

Yes, under some circumstances and depending on the specific hospital’s policies. The University of Vermont Medical Center’s Updated Visitation Policy in Response to Covid-19 states: “The University of Vermont Medical Center is temporarily suspending visitation, restricting entrances, and screening everyone who enters hospital facilities and clinics in response to the COVID-19 pandemic. Until further notice, no visitors will be allowed, with limited exceptions to individuals who are screened, including:”

[Note: Following are excerpts from the Medical Center’s Visitation Policy.]

For outpatient care (e.g. emergency room), visitors who are allowed include:

  • “Visitors are not permitted to accompany patients to outpatient visits unless the patient requires support and assistance to access their appointment.”
  • “Pediatric patients may have one parent or support person for outpatient visits if they are properly screened.”

For inpatient care (e.g. admitted to hospital), visitors who are allowed include:

  • “One parent or support person for pediatric patients.”
  • “One consistent support person may be permitted in other rare circumstances such as for a patient with a cognitive impairment or disability who requires assistance to access care.”

2. How have Children’s Personal Care Services (CPCS) temporarily changed in response to Covid-19?

Children qualify for CPCS because they require extra support with their activities of daily living. The public health emergency caused by Covid-19 means that families may not be able to access extra support from an outside provider due to the increased risk for exposure to the coronavirus. In response to these added barriers to care, the Vermont Agency of Human Services requested a waiver from the Centers for Medicaid and Medicare (CMS) to allow parents and family members of children with CPCS to receive payment for the extra personal care they are providing. This is a significant, but temporary change to the federal regulations that govern CPCS. This waiver is retroactive to March 15, 2020, the Sunday prior to the closure order for Vermont schools. This means parents can submit invoices for the extra care they have provided since March 15, 2020. Read the CPCS Program Changes in Response to Covid-19 for all the details including links to the ARIS forms. These changes were reviewed in a Town Hall meeting on April 10. The CPCS program staff is available to help you. Contact Adam Poulin, Program Administrator at 802-865-1395 or Jessica Hill, CPCS Specialist, at 802-951-5169.  

3. How can I support my child to learn at home?

Parents, families, and caregivers can play an important role in setting routines and encouraging student learning at home. The Vermont Agency of Education has issued “Continuity of Learning Guidelines for Families and Guardians of Students in Pre-kindergarten – 5th grade and Students in Grades 6-12.” “Continuity of Learning” means that effective April 13, school districts are required to provide education services and related supports to all students remotely so that student learning and academic progress is achieved during the time of the Covid-19 emergency. However, school districts will be following their scheduled April vacations for the 2019-2020 school year. 

The Continuity of Learning Guidelines are designed to help families and at-home caregivers navigate the new challenges of home-based learning, which is “unique and should not try to recreate school.” Topics include: the role of families/guardians in supporting remote learning; the importance of developing a schedule; monitoring and setting limits on the use of technology; obtaining social and emotional supports for the whole family; and the importance of self-care for the caregiver(s).

4.What can I do if my child is displaying challenging behaviors which makes home- based learning difficult?

Tracy Harris, Coordinator of Behavioral Supports at the Vermont Agency of Education, outlined some concepts and tools that may be helpful to families — “Responding to Challenging Behaviors of School-Aged Children at Home and/or Childcare Settings.” Tracy explains that “Keeping a regular schedule provides a sense of control, predictability, calm, and well-being for children and youth. Flexibility is also important, especially now. Building in breaks, down-time, play-time, and connecting as a group is just as important for your child’s well-being as continuing their academic learning.” Other strategies she suggests include: “Catch Them Being Good, Planned Ignoring of Low-Level Behaviors, Reminders, the ABC’s of Behavior (Antecedent, Behavior, Consequence),” and more.

April 3, 2020

1. My child has an upcoming appointment through telemedicine. What is telemedicine and what are some helpful tips to prepare for the visit?  
 
Telemedicine is using technology to connect with a health care provider who is at a different location from you. It’s also called telehealth. For helpful tips to prepare for your child’s telehealth appointment, review the short Introduction to Health Care through Telemedicine from the Midwest Genetics Network. It’s also helpful to call your child’s provider or visit their website for more telemedicine information specific to that medical practice. 
 
Your child’s provider can guide you to the best options for telemedicine. Most telemedicine visits will require that you have access to the internet, as the healthcare provider will want to hear and see your child. A computer or cellphone will both work as long as you have a good connection to the internet. If you don’t have access to the internet, visit the Vermont Department of Public Service to find the closest hotspot in order to access WiFi. 
 
2. Will my health insurance pay for telemedicine?
 
A Covid-19 Emergency Response bill was passed last week in the Vermont Legislature. One section on page 16 of the bill relates to telemedicine: “All health insurance plans in this State shall provide coverage for health care services and dental services delivered through telemedicine by a health care provider at a distant site to a patient at an originating site to the same extent that the plan would cover the services if they were provided through in-person consultation.” Talk with your health care provider or insurance company if you have questions or would like to know more about your coverage. For more information about telemedicine and Medicaid coverage, you may contact the Department of Vermont Health Access.
 
3. With all my children now at home, I find it difficult to spread my attention between my child with special health needs/disability and their sibling(s). What resources are available to help my child’s sibling(s) feel included?
 
While Vermont Family Network is no longer able to host SibShops in person, we are committed to providing support for siblings of children with special needs. We are planning a new virtual SibShop format using Zoom, which will take place Saturday April 11th, from 1 – 2:30 pm. Sibs will get a chance to “show and tell” a favorite room in their house, toy, pet, or whatever they choose. Afterwards, we will have a SibChat with a special guest! SibShops are open to all children in Vermont age 6+, who have a sibling with a special health need or disability. For more information or to register, please contact Molly.Lawney@vtfn.org; once you are registered, Molly will send you the Zoom link.
 
4. What are “essential in-person services” during the Covid-19 emergency for people with disabilities served by Choices for Care, Developmental Disabilities Services, or the Traumatic Brain Injury Program? 
 
“Essential Services” are services that assure the health and safety of a person. Essential Services delivered in-person to an individual may continue if the services cannot be provided in an alternate, remote way such as telephone/FaceTime. All in-person service delivery must follow precautions previously set forth and found on the DAIL Covid-19 web page. For examples of “Essential Services,” please refer to the March 25 memo from the Deputy Commissioner of Vermont’s Department of Disabilities, Aging and Independent Living. 
 
5. How can I help my child who has anxiety because of this whole situation?
 
Our Puppet Team has made a “home-edition” (thanks to the Vogelsang-Card family) of the PK-Grade 4 Anxiety Puppet program that you can watch here. It provides some tips and tools for you and your child to use when worry is feeling big. Watch the clip together, talk about worry and what tools you can use when it feels big. Use our Guide to Getting the Conversation Going. For additional mental health resources, visit our website.
 

March 27, 2020

1. Can parents/guardians be paid for caring for their family members who aren’t receiving in-home supports because of the Covid-19 pandemic?
 
According to parent and advocate Tammy Carroll as many as 4,000 people in Vermont receive in-home nursing and personal care that would have left them institutionalized prior to the existence of in-home support programs like High-Tech Nursing and Developmental Services Waivers. Given the pandemic, these people are often no longer able to access the support needed to ensure that they remain healthy at home. A group of advocates, including some graduates of the Vermont Leadership Program, have asked our Governor to pay parents or guardians using existing care budgets allocated to their loved ones as a mitigation strategy during the pandemic. Key Vermont State senators, including Tim Ashe are supportive of these strategies and have moved them forward to the Governor’s Policy Director but orders have yet to be issued. If you’d like to join these advocates, please sign and share their petition and/or join their private Facebook group.
 
2. What are your thoughts on having Children’s Personal Care Attendants in my home?
 
This is SUCH a personal decision. If you do decide to have a PCA in your home, you should follow the Centers for Disease Control and Prevention’s guidelines for caregivers. Physical distancing and fastidious hygiene are still the best ways to guard against the spread of the novel Coronavirus. The less external contact people have right now, the better, but it is a trade-off, especially if family caregivers need to work, or rest, or both. Trust your instincts—you know your family better than anyone.
 
3.  If my child is having a mental health emergency, should I take them to the hospital emergency room?
 
Yes, emergency departments are still open but have put new protocols in place because of the Covid-19 pandemic. These may include pre-screening before heading to or entering the ER, limits on the number of visitors, and the way care is delivered (e.g. telehealth versus in-person). The VT Department of Mental Health designates one Designated Agency (DA) in each geographic region of the state to provide the Department’s mental health programs for adults and children. For information on DAs and Specialized Services Agencies throughout Vermont that may be helpful in a mental health emergency, click here.  
 
4.  If I’m an “essential person” and need specialized child care for my child who has a disability / special health need, what can I do?
 
If you are an eligible, essential person who needs emergency child care, please complete this form from the state of Vermont or call 211 extension 6. The state (through the Agency of Education for children K-8, and the Child Development Division for children birth to 5) will work to connect essential persons who need child care with options for their children. 
 
5. My elementary school child is experiencing anxiety as a result of the pandemic. Can the puppets help them understand their anxiety?
 
The Puppet Team has made a “home-edition” (thanks to the Vogelsang-Card family) of the PK-Grade 4 Anxiety Puppet program that you can watch here. It provides some tips and tools for you and your child to use when worry is feeling big. Watch the clip together, talk about worry, and what tools you can use when it feels big.  For additional mental health resources, visit our website.

6. What changes have been made to Vermont Medicaid as a result of the Covid-19 emergency?
 
The Department of Vermont Health Access website states: “Due to the Covid-19 emergency, Vermont will be temporarily waiving financial verifications required for those seeking to enroll in health insurance; Extending out coverage periods until after the emergency ends; Suspending certain terminations of health insurance; Offering a Special Enrollment Period (1 month) for those who do not currently have health insurance to enroll in a qualified health plan and receive premium and cost-sharing assistance, if eligible. (Eligible Vermonters can continue to apply for, and enroll in, Medicaid at any time.) (3/20/2020)”
 

March 20,2020

1. 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.

2. As part of emergency preparedness, I’d like to have a larger supply of my child’s medication on hand. Will Medicaid allow that?

Yes. “In response to COVID-19 concerns and to ensure that Medicaid members have access to the medications they need, the Department of Vermont Health Access (DVHA) is implementing the following changes to its prescription drug benefits programs, effective 3/18/2020: 1. Members may request early refills of medication up to a 90-day supply as needed.” 

3. Are there any COVID-19 resources specifically for parents of children with autism?

Yes. One resource is the National Autism Association. If you learn of other good resources that we could share with parents, please send an email to info@vtfn.org. Also, April is World Autism Month beginning with United Nations-sanctioned World Autism Awareness Day on April 2. Autism-friendly events and educational activities take place throughout throughout the world in the month of April to increase understanding and acceptance and foster worldwide support.

4. 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.

5. Is there any financial help for my child’s medically-necessary expenses?

Yes, income-eligible families of children with special health needs (birth to 21) may apply for up to $1,000 per 12 month period for their child’s unmet medically necessary needs such as equipment, medications, travel, and therapies. More information here.

May 7, 2020

1. How can parents plan for and participate in virtual IEP (Individualized Education Program) meetings?

IEP teams are have been meeting virtually, either in conference calls or via the Internet using web-based meeting platforms such as Zoom and Skype. While video and screen sharing can enhance engagement, they are not required. IEP meetings can be conducted using a conference line, which is accessible through a traditional phone line or through most virtual meeting platforms. Parents can ask that all documents are shared via e-mail or U.S. mail before the meeting. This new, 6-page Virtual IEP Meeting Tip Sheet addresses these topics:

  • Technology Tips for Participants
  • Hosting Virtual IEP Meetings: Tips for Success (before, during, and after meeting suggestions)
  • Common Questions and Answers About Hosting Virtual IEP Meetings
  • Participating in Virtual IEP Meetings: Tips for IEP Team Members (before, during, and after meeting suggestions)
  • Common Questions and Answers About Participating in Virtual IEP Meetings

April 17, 2020

1. My child has an Individualized Education Program (IEP) at school. What can I expect from my child’s teachers and special educators now that Continuity of Learning is in place?

Families can expect that learning at home will look very different from learning at school. However, there is a process for you to participate in, as part of your child’s IEP team, in the changes that are occurring in the way in which your child receives services. In this guidance, Supporting Learning While Social Distancing: Companion Document for Families of Children with Disabilities, you can read what to expect regarding related services – which include therapies, parent training/education and possible in-person supports, communication, your rights if you disagree with the school and other topics.

2. Can an Act 264/Coordinated Services Plan meeting still happen during the Covid-19 emergency?

Yes, Coordinated Services Plan (CSP) meetings are happening “virtually” since they cannot be done in-person during the coronavirus pandemic. Parents can request a CSP meeting by contacting either a member of their child’s special education or mental health team. It’s best to request the CSP meeting in writing.

The CSP process allows parents, providers (health/mental health), school teams, therapists, and anyone else involved in your child’s care plan to be at the same meeting to collaborate on what is working, what is needed, and to identify gaps and disconnects in care or communication. The process gives families access to a local Parent Representative, who is a parent who has lived experience navigating children’s mental health and other service systems. They can help you prepare for the meeting and make sure that your needs are communicated to the team. Contact Vickie Crocker if you have questions about the CSP process or if you would like a  Parent Support Representative for Chittenden County. For all other counties, contact the Vermont Federation of Families for Children’s Mental Health.

3. My child is turning 16 and needs a transition plan. How will my IEP team do transition planning if we are not in school?

Your IEP team can do transition assessments and many are student led. Special education teachers can use that assessment data to inform what the best career exploration activities might look like for your child. There are many transition assessments that can be done online.

4. How will my child receive FAPE (Free and Appropriate Public Education) through transition services during remote learning?

The Vermont Graduation Readiness Tool can help ensure FAPE with regard to the provision of transition services during remote learning, since it captures all elements of effective transition planning.

April 3, 2020

1. What can I expect from my school regarding behavioral supports that my child was receiving in school? Learning at home is very difficult without these supports.
 
Teachers should suggest how they use behavior plans and transitions in the classroom and how it can be implemented in the distance learning environment. The Vermont Agency of Education and the Department of Mental Health are discussing options regarding the provision of behavioral supports within the Success Beyond Six program.
 
2. My child was receiving Speech and Language Therapy, Occupational Therapy, and Physical Therapy through an Individualized Education Program (IEP) or 504 plan. Could these services still be provided remotely?
 
Yes. It could be possible for these services to be provided remotely. However, these therapies, where services involve student movement, the involvement of the caregiver is almost certainly needed. The details of each child’s services will have to be discussed with your child’s IEP Team or your school’s 504 Coordinator.
 
3. My youth has an Individualized Education Program (IEP). The school has contacted us saying that they are ready to graduate this June. We disagree. What should we do?
 
Students on IEPs graduate by having access to meaningful transition planning and meeting their proficiency based graduation requirements. If you feel as though you haven’t had an opportunity to contribute to your youth’s transition plan, you can use your parental rights to disagree. You can ask for a meeting with your IEP Team to discuss your concerns. You can also ask your Team if they used the Graduation Readiness Tool from the Vermont Agency of Education to make the decision about the graduation date. For more information on transition planning you can look at VFN’s Transition Toolkit for Youth with Disabilities or contact us and talk with one of our Family Support Consultants.
 

April 17, 2020

What other resources are available to help me feed my family?

Visit the Hunger Free Vermont website section “Covid-19 and Food Access” for the latest updates on school meals, WIC (nutrition program for Women, Infants, & Children), 3SquaresVT, meal programs for older Vermonters, and food assistance through the Vermont Foodbank network.

Vermont Legal Aid has a good list of resources on topics including: food, housing, benefits, etc. 

April 3, 2020

What help is available from cable companies, mobile carriers and telephone companies during the Covid-19 pandemic?
 
The Vermont Department of Public Service is collecting information and resources on the availability of Internet and telecommunications services during the Covid-19 emergency. Their website includes information about what cabletelephone, and mobile carriers are doing to assist consumers and places where consumers can find internet access. They will be updating it as new information becomes available. The Vermont Department of Public Service has released an interactive Public Wi-Fi Hot Spot Map to help Vermonters connect to publicly available internet service during the Covid-19 pandemic.

 

1. Are Children’s Integrated Services (CIS) considered essential services?
 

Under the umbrella of Children’s Integrated Services, Early Intervention (EI) services are considered essential. Early Intervention is federally mandated for eligible infants and toddlers (birth to age 3) under Part C of the Individuals with Disabilities Education Act (IDEA.)

2. What happens if I can’t do virtual visits right now because of my family’s circumstances and the pandemic? Will I lose EI (Early Intervention) services?

If you determine that you would like to suspend your child’s early intervention services for a period of time due to any reason related to the current Covid-19 crisis, your child and family will not lose services. Your early intervention providers will work with you to set up a later time to check back in to discuss the continuation of services. If your child is turning three during this time and is potentially eligible for school services after age three, your CIS-EI service coordinator will be working with you and your school to do transition planning and processes.
 

Vermont families whose infants and toddlers have or are at risk of developmental delays are entitled to Early Intervention under Part C of IDEA. During the COVID-19 pandemic, CIS-EI services have been deemed “essential,” and continue to be offered throughout Vermont.

3. When do you expect to offer face-to-face visits for families again?

As detailed in the guidance from the Child Development Division, we are expected to offer face-to-face home/childcare visits again when schools reopen. As always, CIS-EI will coordinate these with families.

What Covid-19 resources are available to share with English Language Learners? What resources are available for people who use American Sign Language?

Vermont

 
Vermont Department of Health “What to do if you are diagnosed with Covid-19” Arabic Burmese Chinese English French Kirundi Nepali Somali Spanish Swahili Vietnamese
 
 
Vermont website with many translated Covid-19 materials: Vermont 411 – Resources for Everyone in our Community
 
Short videos created in Vermont about Covid-19 in these languages: ArabicBosnianDinka, FrenchKirundiLingala,  Nepali, SomaliSpanish, and Swahili. More detailed videos in these languages: Nepali and Vietnamese. Other Covid-19 videos, including how to properly wear a mask is available in different languages on the Vermont Multilingual Coronavirus Task Force YouTube channel
 
Vermont Department of Health has a general information document “Tips to Help Keep Illness from Spreading:” ArabicBurmeseChineseEnglishFrenchKirundiNepali,  SomaliSpanishSwahili, Vietnamese 
 
 

National 

Centers for Disease Control and Prevention series of videos about Covid-19 in American Sign Language