What choices do we have about supports for my son leaving school in June?
There are programs and services available at your region’s designated agency (Developmental Disabilities Services), and at non-profit organizations that offer various levels of support. Staff at the designated agency are able to tell you the contact information for the non-profits serving your area. You can choose to self-manage your son’s program, or have an agency do so.
At what age do we have to leave our pediatrician and find an adult provider?
Some pediatricians will continue seeing a child she has known from birth after age 18. However, many pediatricians encourage a move between ages 18 and 21 to an adult healthcare provider. Specialists are better able to care for adult bodies; referrals and expertise are better suited to our young adults in the adult healthcare system rather than in pediatric practices.
My son has developmental disabilities and is in his 30′s. My husband and I are getting older and won’t always be here.
Many aging parents have similar concerns about their adult family member’s quality of life after they are gone. Parents think about independence and vulnerability, housing and employment, community and social inclusion. Some find support and ideas from other parents’ experience, learning from each other at Families Together support groups, conferences, and family organizations.
My child with a disability keeps us all hopping; Our other children sometimes feel left out. What can we do?
Sibshops provide opportunity for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. For the siblings who attend Sibshop, they are lively, fun celebrations, which include games and activities, discussion, special guests, cooking. Sibshops are not therapy, group or otherwise, although their effect may be therapeutic for some children. Sibshops acknowledge that most brothers and sisters of people with special needs,like their parents, are doing well, despite the challenges of an illness or disability. Adapted from SIBSHOPS: WORKSHOPS FOR SIBLINGS OF CHILDREN WITH SPECIAL NEEDS (Donald J. Meyer & Patricia F. Vadasy, 1994, Baltimore: Paul H. Brookes Publishing Company).
Our child with a disability needs assistance with developing personal care and daily living skills. Is there help available?
Children’s Personal Care Services (CPCS) is a state plan Medicaid program available to children under the age of 21, with a significant disability or health condition that substantially impacts care giving needs and/or the development or self care needs. The goal of CPCS is to provide supplemental assistance with self-care and activities of daily living at home and in the community. Eligibility is determined by an Assessment of Need evaluation, which is completed by a health professional with the family. For more information call Family Support at 800-800-4005 or to contact CPCS call (888) 268-4860.
My child is being referred for evaluation and treatment outside of Vermont. Can we seek care at an out of state facility?
Sometimes the pediatrician or local specialist may refer patients to out of state care, such as at Boston Children’s Hospital. Sometimes parents simply want another opinion and a facility outside of Vermont seems to hold the most expertise. If it’s decided that you will be going out of state, check with your insurance, as you may need prior authorization. Your child’s pediatrician should be able to help with this. If your child has Medicaid, there may be additional help available, such as transportation, meals, and lodging reimbursement. Prior approval from Medicaid is necessary. When traveling, save receipts. Many hospitals have family centers, which is staffed by persons who are available to help with logistics for the family coming to their facility. Many hospitals will also have low cost shared housing, such as Ronald McDonald house. Many hotels offer hospital rates, so be sure to ask when calling to make a reservation.
Do you have support for my teenager who has a physical difference?
VFN can make parent matches, that is, connections with another parent who has similar experiences and family circumstances. These connections are by phone and email conversations among parents. Sometimes parents choose to have their families or teens meet. We can help find teen support resources, like KASA online, Green Mountain Self-Advocates, or local support groups.
What services will we be able to get for my child, who has several diagnoses, if we move to Vermont?
For families relocating to Vermont, parents have often found other parents to be a good practical resource for finding out about healthcare, pediatricians, hospitals, insurance, and school districts. Some choose to use the VFN listserv to ask their questions directly, and Vermont parents respond with their experiences. Staff can answer some questions, as most of us are parents.