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We provide families and individuals with the support, connections, and information they need to make informed decisions and choices about their health care.

Support

Family Support Consultants can:

  • Help you connect with other families and individuals for support, information, and resources 
  • Help you navigate complex medical and health care systems and to connect with programs your child might be eligible for
  • Support you in lifting family voices in a variety of settings
  • Help you figure out funding of your child’s medical care

Connections

Family Support Consultants can:

  • Help you connect with people who have similar experiences through our Parent Match Program. A parent talks with another parent with shared experiences for support and information
  • Help you find a Support Group 
  • Help siblings (ages 6+) of children with special needs connect with other siblings for fun, food, crafts, and activities in Sibshops

Information

Family Support Consultants can:

  • Help you navigate the complexities of  health care. See Accessing Health Care for an overview of public insurance, and options for accessing Medicaid. All parents of a child with special health needs should explore applying for Medicaid to help pay for their child’s needs. Medicaid eligibility is not solely based on income.
  • Help you learn about health care consumers’ rights in the Vermont Patient’s Rights.

Vermont Family Network is funded in part by grant number H84MC21657-01-00 for Family Professional Partnership/CSHCN provided by the Health Resources and Services Administration (HRSA). We are part of a federal initiative which funds Family to Family Health Information Centers in every state, providing information and education on health issues for children and youth with special health care needs (CYSHCN). For more information about Family to Family Health Information Centers visit the HRSA website at https://www.hrsa.gov/about/news/pressreleases/110517familytofamily.html.

The contents of the website, however, and any documents cited herein do not necessarily reflect the views or polices of the United States Health Resources and Services Administration.

Is your health insurance meeting your family’s needs? We can help you with accessing health care, by:

  • Answering questions about insurance and other resources that help pay for health-related services and products
  • Assisting with Katie Beckett Medicaid and other applications
  • Helping with the appeals process
  • Brainstorming solutions to gaps in your health care coverage

Medicaid

Medicaid is a low cost or free health coverage program for Vermonters. Eligibility is based on household income, family size, disability, and other criteria.

  • Dr. Dynasaur is Vermont’s Medicaid for children under the age of 19 and pregnant women. Eligibility and cost (premium) is based on household income and family size.
  • Children with special health needs may qualify for Medicaid through Disabled Children’s Home Care (DCHC). This program is also known as Katie Beckett Medicaid. Eligibility is based on your child’s disability and their income and resources. Parent’s income and resources are not counted. Contact us if you would like an application and information packet.
  • Children (birth through age 18) may receive Medicaid if they are eligible for Supplemental Security Income (SSI). Eligibility is determined by the child’s disability and household income. Children over the age of 18 with a disability may qualify for SSI based on their own income and resources.
  • Our Six Ways to Access Medicaid guide explains additional ways to access Medicaid. It is a great resource covering topics including: managing health care for children with special needs, available public programs, the benefits of Medicaid and EPSDT (Early and Periodic Screening, Diagnosis, and Treatment), grievance and appeals, and more.
  • Visit the Vermont Medicaid Portal to see if your family doctor is a Medicaid participating provider.

Applying for Health Care

Vermont’s Early Childhood Developmental Disorders Insurance

Vermont law requires health insurance carriers to provide coverage for evidence-based therapies for children with early childhood developmental disorders. The law indicates the treatments, including Applied Behavior Analysis (ABA), be a covered service for children birth to age 21, and who have an early childhood developmental disorder such as Autism Spectrum Disorder (ASD), Down Syndrome, Fragile X, Williams Syndrome, and others. For information on how to obtain coverage, see our Early Childhood Developmental Disorders Insurance fact sheet.

Families of children with special health needs may have questions related to their child’s health. Each person’s circumstances are unique, so please contact us if we can help. We are parents ourselves of children with special health needs.

 1.  I spend a lot of time overseeing my child’s care. Is there any help available?

Overseeing your child’s care can be time consuming and at times overwhelming. Our Care Notebook can help you organize and keep track of information related to your child. Your child’s primary care office or Medical Home may have a Care Coordinator who can help you access resources and information, as well as support you in keeping your family and child well. Many practices have adopted the core concepts of patient-and family-centered care: dignity and respect, information sharing, participation, and collaboration.

2.  We are over income for Vermont Medicaid (Dr. Dynasaur). Are there other Medicaid options for my child who has a disability?

The Disabled Children’s Home Care (DCHC), also known as Katie Beckett Medicaid, is another way to access Medicaid. This program is for children under the age of 19. Parent’s income and resources are not counted toward eligibility, only the child’s. The determination depends on the degree of the individual child’s functional limitations and their need for specialized care and services. Many families who have private insurance also apply for Medicaid. Contact us or Green Mountain Care to request an application packet. It’s important to complete the application packet correctly and completely. Contact us if you would like assistance with, or tips on completing the application forms. Refer to our webinar,  Disabled Children’s Home Care (DCHC) – Vermont’s Katie Beckett Medicaid, for more information.

3.  My child sees many pediatric specialists. When will we need to switch to adult providers?

Adult specialists are better able to care for adult bodies; referrals and expertise are better suited to our young adults in the adult healthcare system. Specialists vary as to when they will guide your child to transition to an adult practice. Ask your child’s doctors or talk with your Care Coordinator if you have one. Got Transition has an abundance of information including a Health Care Transition Resources guide.

4.  How can I help plan for my child’s financial future?

As children become adults, they may receive state and federal benefits to supplement their wages. Medicaid and Supplemental Security Income (SSI) are income sensitive. SSI limits an individual’s income and assets to just $2,000 in any given month. Individuals with a disability, and their families, can save for their future with these options:

  • Special Needs Trust (SNT) can be set up with the help of an attorney. The funds in the SNT are not counted as income for benefits eligibility. There are different types of SNTs.
  • ABLE accounts, which stand for Achieving a Better Life Experience, will allow individuals with disabilities to save up to a maximum of $100,000 for qualifying expenses without it affecting their benefits. Vermont’s ABLE program is called STABLE. Visit the Vermont State Treasurer’s website for complete information and to sign up.

5. What should I be thinking about as my child enters their teens?

For families with children with disabilities, making plans for the future is an ongoing process from the moment of diagnosis. Our Holistic Transition Guide for Families of Children with Disabilities was created by parents, for parents, family members, and caregivers of children with disabilities. Topics covered in the Guide include: housing options, independent living skills, recreation, friendships, safety, transportation, education, health, and employment/income. Our Transition Toolkit for Youth with Disabilities is full of helpful information. 

6.  Is there any help for my child who struggles with behavior and anxiety?

Many children and adolescents have mental health challenges that affect their daily functioning. Parenting a child who is experiencing a mental health challenge can be a confusing and difficult process. Please call us for help and resources.

7.  Our child with a disability needs assistance with developing personal care and daily living skills. Is there help available?

Children’s Personal Care Services is a Medicaid benefit for children, under the age of 21, diagnosed with a verifiable long-term disability or health condition, which impacts age-appropriate development of activities of daily living (ADLs). A verifiable long-term disability is defined as a health condition or disability that is expected to last one year or more. The federal government defines ADLs as dressing, bathing, grooming, toileting, eating or feeding, and mobility and transfers. This program is intended to provide supplemental assistance to the primary caregiver as individualized one-to-one support for the identified child related to their ADLs. Eligibility is determined by an Assessment of Need evaluation, which is completed by a health professional with the family. To apply for Children’s Personal Care Services, contact the Vermont Department of Health or your local Designated Agency. Finding a child’s Personal Care Attendant can be challenging. Review our Finding and Hiring a Child’s Personal Care Attendant Fact Sheet for helpful tips.

If you or family members of any age (child to elder) need to hire someone to provide support in your home, check out Rewarding Work or Care.com.

8.  Who can I talk to who understands what I’m going through?

We provide at no cost to you Parent Matches. Talking on the phone with a parent who has “been there” can offer a source of empathetic listening, hope, encouragement, and problem solving. We connect families of children with special needs with other families for caring and support. Parents should never feel alone! Also, many parents find it helpful to attend a support group where they can meet and talk with other parents. Parents can also join our closed Facebook page for Vermont Families of Children with Special Health Care Needs

9.  What support is available for my child’s siblings? 

Sibshops provide brothers and sisters (ages 6+) an opportunity to:

  • Meet other brothers and sisters who “know” what it’s like to be a sibling, in a supportive non-judgmental environment
  • Have an opportunity to talk about and listen to others’ concerns related to being a sibling of a child with special needs
  • Make new friends, learn new games, do crafts, share a snack, and have a lot of fun

Sibshops is a program of the Sibling Support Projectwhich is dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns. The Sibling Support Project also connects siblings and offers online support.

10.  Will my child receive services as an adult?

Vermont’s Agency of Human Services, Department of Disabilities, Aging and Independent Living, offers a variety of programs and services as does the Department of Mental Health.

The transition from high school is an exciting time for youth and their families. See our Transition Toolkit for Youth with Disabilities for a checklist of what to consider along with many helpful resources.

11.  My child needs specialized care out of state.  Are there resources to help? Can I get help with travel expenses like housing?

Traveling out-of-state for specialized care can be stressful and financially difficult. Housing, food, the cost of gas, and medical expenses are just a few things that you will need to consider when traveling away from your home. A medical social worker through Children with Special Health Needs may be able to help with resources such as housing or completing a Medicaid application if you and your family are eligible. We can also help you complete a Medicaid application. 

Talking to another parent who has had a similar experience through our Parent Match program may also be helpful. They may have suggestions or tips on how to get food vouchers when at the hospital or fun things to do when you have some down time. 

The University of Vermont Children’s Hospital offers a virtual tour. We have a Travel Guide for Vermont Families Receiving Services from Boston Children’s Hospital

What is a Care Notebook?

Are you a parent of a child with special needs? Our Care Notebook is a tool to help you organize and keep track of information about your child. This is your place to organize medical, educational, and other important information.

You can personalize your Care Notebook to meet your needs. Uses include:

  • Planning tool and time saver
  • Everything in one place so information is at your fingertips
  • Portable – take to school meetings, doctors’ appointments, etc.
  • Helps you when advocating for your child
  • Can help strengthen communication between your family and health and educational professionals

Where can you get a Care Notebook?

You can print the entire contents of our Care Notebook and put it in a large 3-ring binder or you can contact us and we would be happy to send you the starter packet. Our Care Notebook is also available in Nepali.

Please contact Jamie Rainville at the Vermont Family Network at 1-800-800-4005 ext. 243 for more information or to request a packet.

Definition

Family-centered care assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-Centered Care is the standard of practice which results in high quality services.

Principles of Family-Centered Care for Children

The foundation of family-centered care is the partnership between families and professionals. Key to this partnership are the following principles:

  • Families and professionals work together in the best interest of the child and the family. As the child grows, they assume a partnership role.
  • Everyone respects the skills and expertise brought to the relationship.
  • Trust is acknowledged as fundamental.
  • Communication and information sharing are open and objective.
  • Participants make decisions together.
  • Everyone is willing to negotiate.

Based on this partnership, family-centered care:

  • Acknowledges the family as the constant in a child’s life
  • Builds on family strengths
  • Supports the child in learning about and participating in their care and decision-making
  • Honors cultural diversity and family traditions
  • Recognizes the importance of community-based services
  • Promotes an individual and developmental approach
  • Encourages family-to-family and peer support
  • Supports the child as they transition to adulthood
  • Develops policies, practices, and systems that are family-friendly and family-centered in all settings
  • Celebrates successes

A medical home is an approach to providing health care services in a high-quality and cost-effective manner. A medical home is not a place, but rather a partnership between your family and your child’s doctor/health care team. A medical home extends beyond the four walls of a clinical practice. It includes specialty care, educational services, family support and more. A medical home helps a family feel recognized, known, respected, and supported.

The American Academy of Pediatrics describes the medical home as a model of delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective.

Family-Centered Partnership

A medical home provides family-centered care through a trusting, collaborative, working partnership with families, respecting their diversity and recognizing that they are the constant in a child’s life.

Community-Based System

The medical home is an integral part of the community-based system, a family-centered coordinated network of community-based services designed to promote the healthy development and well being of children and their families. As such, the medical home works with a coordinated team, provides ongoing primary care, and facilitates access to and coordinates with, a broad range of specialty, ancillary and related community services.

Transitions

The goal of transitions is to optimize life-long health and well-being and potential through the provision of high-quality, developmentally appropriate, health care services that continue uninterrupted as the individual moves along and within systems of services and from adolescence to adulthood.

Value

Recognizing the importance of quality health care, appropriate payment for medical home activities is imperative. A high-performance health care system requires appropriate financing to support and sustain medical homes that promote system-wide quality care with optimal health outcomes, family satisfaction, and cost efficiency.

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