How to Find an Adult Primary Care Team That Will Provide a Medical Home (15)
A 5-Step Process
Have a vision: Learn about the “Medical Home” model of healthcare by watching a brief video from the Patient-Centered Primary Care Collaborative: Introduction to the Patient Centered Medical Home. (16)
Identify a high quality practice team in your area: Ask your current team of trusted healthcare provider(s) to make referrals to adult primary care and specialty care providers. Be sure to clarify who will provide inpatient care. Increasingly, this care is provided by a separate group of physicians called “hospitalists.”(17) Begin the process at least a year or two before your child officially ages out of the pediatric healthcare system. This typically occurs between 18-21 years of age, so starting at 16 is not too early (18). Remember, transition is a process, not an event!
- The Transition Information Form from Healthy TransitionsNY.org can be used as a planner to identify the entire adult healthcare team, including primary, specialty care, emergency and the inpatient (hospitalist) team. (19)
Contact professional medical societies to locate adult primary care doctors:
- Choosing a Family Doctor: Guide from the American Academy of Family Physicians–primary care family medicine physicians. (20)
- About Internal Medicine: Information from the American College of Physicians–internal medicine primary care physicians.
- American Academy of Physical Medicine and Rehabilitation–physicians specializing in rehabilitation.
- American Academy of Cerebral Palsy and Developmental Medicine–physician organization that promotes research and services for people with cerebral palsy and childhood-onset disabilities, a national directory.
- American Academy of Developmental Medicine and Dentistry–a physician organization focused on promoting research and clinical care for individuals with neurodevelopmental disorders and intellectual disabilities, dentistry and other services.
- Association of University Centers on Disabilities is an organization that promotes through research, “independence, productivity, and community inclusion” for individuals with developmental disabilities. Their web site has directory of offices throughout the nation.
Ask to speak with the Information and Referral specialist at local or State agencies that serve people with medically fragile conditions.
- Office for People with Developmental Disabilities, a centrally important statewide agency that oversees funding and services for persons with developmental disabilities and medically complex conditions. Their Developmental Disability Service Offices (DDSO) serve as conduits and contacts for local services and referrals.(21)
- New York Acts: An Initiative for Adults and Children on the Autism Spectrum
- New York State Chapter of the ARC, founded by two Bronx mothers in 1949 “to meet a critical mission — to improve the quality of life for people with intellectual and other developmental disabilities.” NYS ARC offers a wealth of information on supports and services, from self-advocacy to guardianship issues to educational guidance.
- Cerebral Palsy Associations of New York State is “a broad-based, multi-service organization with 24 Affiliates and 18,000 employees providing support, an array of services and programs for over 100,000 individuals with cerebral palsy and developmental disabilities and their families.
- HealthyTransitionsNY.org: Finding Community Resources teaches skills and provides tools for care coordination, keeping a health summary, and setting priorities during the transition process to youth with developmental disabilities who are transitioning from pediatric to adult care. It uses video vignettes to teach and demonstrate health transition skills and interactive tools to foster self determination and collaboration.Your Medicaid Service Coordinator may also have information about healthcare providers who specialize in the care of adults who are medically complex and/or who have a developmental disability.
Network informally with other families and individuals with disabilities to identify a high quality, primary healthcare team:
- Independent Living Centers is an organization composed of 27 appointees from around the state, “a majority of whom have disabilities, representing diverse cultures and needs in the state.” With other State partners, it is responsible for the development, implementation and monitoring of the 3-year Statewide Plan for Independent Living. From their web site: “Independent Living means controlling and directing your own life, taking risks, and being allowed to succeed and fail on your own terms.”
- Self Advocates of New York State, an organization operated by individuals with developmental disabilities. They advocate for services and support as well as promote public awareness of developmental disabilities and related issues.
- Medically Fragile e-group sponsored by Parent to Parent of New York State, a statewide organization that advocates for children with special needs and connects parents of children with special needs with other parents who have experience and skills in raising a child with special health care needs. From their web site: “The purpose of this group is to disseminate and share information regarding children who have complex medical needs, are considered medically fragile and require skilled nursing care. This e-group is a place where parents can connect and support each other by posting questions, sharing resources, comments and stories. It is interactive, and parents are able to receive feedback from other parents across New York State.”
- Family2Family Health Care Centers is a healthcare information resource provided by Parent to Parent of NY State. Through its contacts, it provides families of children with special healthcare needs with “objective, family-friendly health care information.” Families may get information and referrals, “connect with Health Care Resource Parents (Request a Parent Match), and receive training on health care insurance and other financial issues, working and collaborating with health care professionals.”
Check that the adult healthcare provider accepts your insurance
- Call your insurance company to get a list of participating providers.
- Find out about insurance options that you may be eligible for:
- New York State Partnership for Long-Term Care is a program combining long-term care insurance and Medicaid Extended Coverage. Its purpose is to help New Yorkers financially prepare for the long term care in a nursing home, home care or assisted living. It is an insurance policy you purchase–Medicaid Extended Coverage–that permits you to protect some or all of your assets.
- Plan Ahead New York: Information about Long-Term Care Insurance in New York State.
Make sure the adult provider has an up-to-date Health Summary
Ask pediatric providers to send introductory letter or recent medical summary prior to the visit.
Bring a copy of your own up-to-date health summary prior to the visit
- HealthyTransitionsNY.org: “Keeping a Health Summary”
- Medical Orders for Life Sustaining Treatment (MOLST) Form is a legal form designed to stipulate and honor an individual’s preferences in providing quality end-of-life care. There is more about this in the End of Life Planning section.
- My Health Passport is a health summary from the Florida Center for Inclusive Communities, which provides training, technical assistance and research focused on supporting individuals with developmental disabilities, and promotes inclusiveness fo individuals with developmental disabilities.
- AAP Emergency Information Form for Children with Special Health Care Needs is a health form for parents of children with special health care needs who wish to pre-plan for the need for emergency care, should it arise. The form provides an emergency physician with access to important information needed to properly care for children with complex, special health care needs. (17)
Interview adult provider to make sure the fit is right: In addition to meeting with the adult primary healthcare team, it may be helpful to also request a meeting with a social worker and/or case manager for the hospitalist team that will provide inpatient care in adulthood. Make sure to discuss how the adult primary care team will collaborate with the inpatient team. Medical Home Checklists and Tools for Effective Communication:
- HealthyTransitionsNY.org: “Speaking Up at the Doctor’s Office” is a video feature that provides to an individual with a developmental disability the skills and tools to express his/her needs during a doctor’s appointment.
- American Academy of Family Medicine: Patient Centered Medical Home Checklist is a guide for family medicine physicians to develop a patient centered medical practice. It is useful to parents in that it describes, from the point of view of the physician, the elements of a patient centered medical practice.
- Family-Centered Care Self-Assessment Tools are designed as an opportunity for healthcare practices and families to assess current areas of strength and identify areas for growth, plan future efforts, and track progress toward family-centered care. This packet includes a Family Tool, a Provider Tool, and a Users Guide. It is available for purchase from the Family Voices website for $1.00.
- Families Partnering with Providers: A 7-page booklet of tips on communicating with a child’s healthcare providers: Preparing For An Office Visit, Talking With Your Child’s Provider, Learning More and Helping Your Provider Help Other Families. It is available for purchase from the Family Voices website for $0.50.
- AAP Bright Futures Health Care Visit Checklist: What to do before, during and after a medical visit, to help the health care provider to be able to offer a medical home.