Families of children with special needs have many health questions. Each person’s circumstances are unique, so please contact us if we can help. We are parents ourselves of children with special 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 his or her need for specialized care and services. Many families who have private insurance also apply for Medicaid. Contact Green Mountain Care or Vermont Family Network 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 Six Ways to Access Medicaid booklet 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:
- A 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. The following states currently have programs available now: Ohio’s STABLE account program, Tennessee’s ABLE TN program, and Nebraska’s ENABLE program are all national programs, which means you don’t need to be a resident of those states to open an account; some fees may apply. Vermonters may choose to enroll in either state’s program or wait until Vermont’s program goes into effect in January 2017. More states are expected to launch their programs between mid-2016 to 2017. If you would like more information regarding ABLE accounts, please call us and ask to speak with a Family Support Consultant.
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.
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 and hiring a child’s Personal Care Attendant can be challenging. Review our Fact Sheet for helpful tips.
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. Vermont Family Network connects 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.
9. What support is available for my child’s siblings?
Sibshops provide brothers and sisters 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 meal, and have a lot of fun.
Sibshops is a program of the Sibling Support Project, which 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. I’m exhausted and need a break. Where can I get help?
For parents of children with special needs, the physical, emotional, and financial demands can be overwhelming. We periodically receive funding to provide parents with one-time respite. COMFORT (College of Medicine Friends Offer Respite Time) is a program run by medical students and undergrads at the University of Vermont through which student volunteers spend a few hours each week with a child with special needs. 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.
11. 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.
12. My child needs specialized care out of state. Are there resources to 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. 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. Please call us for help.
For more information related to health, head over to our health resources page.