By Jenifer Simpson, Senior Policy Associate and Susan Goodman, Esq.
States generally do not have experience in designing capitated systems of high quality for people with disabilities. Furthermore, commercial health plans have little experience in providing health-related services to people with disabilities and are unaccustomed to addressing needs beyond acute care. In order to ensure that the assistive technology (A.T.) needs of individuals with disabilities are met in managed care systems, a great deal of work needs to be accomplished by individuals with disabilities and their families.
Below are some suggestions for activities that can be undertaken by advocates to move emerging health systems towards meeting the A.T. needs of individuals with disabilities.
1. Find out how many managed care plans are in effect in the state and these plans are doing to address the needs of individuals with disabilities. For example, in the District of Columbia the plan for children with disabilities is called "Health Services for Children With Special Needs."
2. Get documents describing the details of the plan including a copy of the plan, promotional and introductory literature, the initial "request for proposal" issued by the state, and the contract entered into by the state and the managed care plan. It will probably take some time to pull all these together; however they are crucial in assessing what plans do or do not cover, and what they say will cover.
3. Review the specific language that addresses the needs of people with disabilities. Pay particular attention to how "assistive technology," "medical necessity," and "home health services" are defined or limited, if at all.
4. Start an initiative to uncover instances of denial of any of these services. Collaborate with staff from the various Protection and Advocacy (P&A) programs (e.g., the vocational rehabilitation Client Assistance Program, P&A for the Mentally Ill, P&A for persons with developmental disabilities). Their reports will be of great help in developing an analysis of the strengths and weaknesses of managed care entities in serving individuals with disabilities.
Collect and document denials of A.T. for individuals with disabilities. Include detailed information about what type of service or device was requested and the reasons given for denial. Also include a brief profile of the consumer (age, sex, disability, etc.).
Often a verbal denial is given by an employee with the managed care organization. He or she will say that home environmental controls cannot be covered or that a scooter, hearing aid or customized seating for a wheelchair is not allowed. The parent or adult customer may be told the reason is that it is not on the list of "approved items," it is not "medically necessary," it is not on the fee schedule that it is not reasonable to approve it at this time."
In the case of evaluations and recommendations for certain types of devices or services, the response may be "we've never done this before." It is important to encourage managed care customers to ask for these type of denials in writing. It is also important to ascertain if a 'right to appeal' notification was given to the consumer. Document the cost of medical care that arises from the failure to provide the customized device, such as personal care services.
5. If feasible, develop a survey for a group of managed care customers discussing their experiences when requesting specific assistive technology (e.g., augmentative communication devices, scooters, FM hearing devices, lifts or elevators in homes).
6. Develop a report on the lack of consumer responsiveness in managed care organization. Release it publicly through press conferences and related media contact. Also, make sure that the Health Care Finance Administration (HCFA) in Baltimore, Maryland receives a copy of your report.
7. Work with the A.T. advocacy programs (including the state Protection and Advocacy program) to challenge the managed care organizations for lack of service and provision of A.T.
8. If your state is still developing the requirements for contracts with managed care organizations, it is important to "be at the table". This means that the technology-related assistance program must 'be invited' to planning and development meetings with persons in the Governor's office, state Medicaid office and the state administration for mental retardation/developmental disabilities. The following issues and questions should be raised to facilitate customer service to people with disabilities by managed care organizations:
7. Keep us informed of the progress you make in your state.
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