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| Chapter 3: Sorting Out the White Coats |
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NAVIGATING THROUGH THE SYSTEM
The health-care system is becoming ever more complex, as managed care increasingly dictates what services a person can use and how often, and state and federal guidelines for people with disabilities change frequently. It can be confusing and frustrating.
Many of the health professionals described above can act as your advocates in the system, especially social workers and registered nurses.
It's tough to keep up with changing rules and regulations, managed care with its restrictions on access to specialists, and new legislative plans. Chapter 9 explains some relevant programs in detail. But keep up to the best of your ability. You may find it satisfying to become an advocate and guide for others later on as you get used to the system.
Clinics
MDA IS HERE
TO HELP
MDA's 230 hospital-affiliated clinics provide the best medical care available from doctors, nurses and therapists who are experienced in dealing with neuromuscular diseases. These clinics also serve as sites for clinical trials of the latest experimental therapies and drugs for the 40 diseases in MDA's program. MDA clinics offer an interdisciplinary team approach toward initial diagnosis and follow-up care.
Among the services provided at MDA clinics are:
- Diagnosis (see Chapter 2)
- Follow-up medical care
- Periodic re-evaluations
- Prescriptions and evaluations for physical, occupational and respiratory therapy
- Social services -- Many MDA clinics can help families identify alternative sources of payment for medical care, or programs for counseling, respite care and other services (see Chapter 9).
- Flu inoculations, to help protect people with neuromuscular diseases from respiratory complications
- Cooperation with the personal physician in the form of summary reports and letters of medical necessity, and advice on how muscular dystrophy affects other medical conditions
- Genetic counseling may be provided to help identify carriers of DMD and assess a family's risk of having a child with DMD (see Chapter 1).
- Transportation, when a family needs assistance in arranging for transportation to appointments at the nearest MDA clinic
Call your local MDA office to make an appointment at your nearest MDA clinic. |
Next... CHAPTER 4: Your Child's Physical Needs  |
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