Diagnosis Specific Advocacy & Resources
Groups specific to certain diagnoses allow community members and providers to engage in advocating for children and individuals with these disorders. Cerebral palsy is an excellent example. As the number one cause of motor disability in childhood, several organizations advocate by providing education and through advocacy efforts nationally.
Other organizations exist for other common and less common diagnoses such as spina bifida, muscular dystrophy, SMA, and other rare disorders.
Social media platforms such as Facebook can offer support groups and resources for those with CP and other rare diagnoses and those with lived experience.
Writing a Letter of Medical Necessity (LOMN)
In addition to information gathered for tertiary payers below, the prescriber must be sure the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) primary care provider (PCP) form has been completed and included with other documentation. The managing clinician in the cover letter should stress the need for prescribed treatment/intervention by criteria in the bullet points below. This criteria EPSDT Medicaid requires is particularly useful if the request is denied.
Most importantly, the prescribed service/intervention/DME should address one or more of the following bullet points as appropriate, i.e., “intervention” will:
- Prevent the onset of an illness, untoward condition, injury, or secondary disability;
- Reduce, correct, or ameliorate the physical, mental development, or behavioral effects of an illness, condition, or disability;
- Assists the individual in achieving or maintaining the sufficient functional capacity to perform age or developmentally-appropriate daily activities.