Medical Home Resources
Physician Parent Caregivers: Offers resources on its website to advance quality of life and independence for all young people with chronic conditions & disabilities and their families.
National Center for Medical Home Implementation: A joint initiative of the Maternal and Child Health Bureau of the federal government and the American Academy of Pediatricians. It was established to ensure that all children with special needs have access to a medical home and is a rich resource of information on what a medical home is and how it benefits an individual (22).
National HealthCare Transition Center: “Got Transition” is a national resource of information for families and caregivers that that focuses on the young adult’s transition from pediatric to adult healthcare (23).
Healthy Transitions NY: was developed by the NY State Institute for Health Transition Training. The web site is an excellent source of transition knowledge and know-how, designed for youth with developmental disabilities from ages 14-25, their families, caregivers and healthcare providers. It teaches skills and provides youth with developmental disabilities with tools for setting priorities and making everyday decisions about their care and future during the transition process.
Person Centered Planning Education Site of Cornell University Employment and Disability Institute. This group describes its goal as: “Person-centered planning involves the development of a “toolbox” of methods and resources that enable people with disability labels to choose their own pathways to success; the planners simply help them to figure out where they want to go and how best to get there.”
Self Advocacy Association of NYS is an organization composed largely of individuals with developmental disabilities whose aim is to demonstrate that people with developmental disabilities can live their lives as “full and contributing citizens of their communities.” Their emphasis is on advocating for legislative and health issues, reaching out to individuals with developmental disabilities and assisting them in becoming full, participating members of their community.
The Center for Self-Determination advocates to influence public and private resources directly related to “choice and control” for individuals with disabilities and their families.
Resources to Find Medical Home Professionals
One of your first choices might be to contact the New York State Department of Health’s Patient-Centered Medical Home (PCMH), “a model for care, provided by physician-led practices that seeks to strengthen the physician-patient relationship by replacing episodic care based on illnesses and individual’s complaints with coordinated care for all life stages, acute, chronic, preventive, and end of life, and a long-term therapeutic,” and the Office For People With Developmental Disabilities (OPWDD), which has regional offices throughout the State. Both agencies have Information and referral specialists who can assist people with medically fragile conditions and their caregivers.
You can also contact one of the very helpful advocacy (support for your child’s needs) organizations or groups that offer advice from caregivers of children with medically fragile conditions or other developmental disabilities — such as Parent to Parent – for referrals.
Parent to Parent of NYS: Parent to Parent will match parents/caregivers to another parent/caregiver with a similar disability or special health care need to provide support. Also offers an on-line training for parents on different topics: Advocacy Skills; Home Medical Care, Health Care Record Keeping, How to work with Professionals, Health Care Financial Resources: http://www.parenttoparentnys.org/onlinetrainingcenter.htm
National organizations such as Arc and UCP are also often connected with healthcare professionals who care for people with developmental disabilities across the lifespan.
Finally, professional organizations such as the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) and the American Academy of Developmental Medicine and Dentistry have provider lists for specialists who have expertise in care across the lifespan for people with childhood onset disabilities. Physicians who have subspecialty training in Physiatry (Physical Medicine and Rehabilitation) are also an important resource.
Medicaid Service Coordinators can help medical providers to create a medical home. The Healthy Transitions website has a module on this topic.
One excellent example of a regional medical home practice is the Adirondack Region Medical Home Pilot, a joint project of 40 primary care physicians, five hospitals, seven health plans and Medicaid that have combined efforts to provide the care coordination for children with special needs, and essentially to transform health care delivery through medical home practice in the upstate New York Region. The website describes the pilot as: “the “patient-centered medical home” model for healthcare services. This model calls for every patient to have a trusted, personal physician – a doctor trained to provide first contact, continuous and comprehensive care. It also emphasizes preventive care and active management and coordination of care for people with chronic conditions.”