Developing Individual Program Plans for Health Care in Generic Primary Care Practices

Effective health care is a partnership between a health care provider and a patient. In the community, patients have significant responsibilities with regard to their care. Responsibilities that are generally considered patient responsibilities in generic primary care practices include:

1. Finding doctors.
2. Arranging funding for health care.
3. Asking for help when you are ill.
4. Scheduling routine and acute visits in an appropriate time frame.
5. Preparing for your doctor’s visit.
6. Being ready for your doctor on time.
7. Communicating with your doctor.
8. Cooperating with medical evaluations.
9. Making informed consent decisions.
10. Adhering to medical recommendations for general self-care and specific therapies.

For patients who plan to receive their health care in generic primary care practices, individual program planning teams can design services and supports to enable the client to meet their responsibilities in the provider-patient relationship. This article describes a community-based, family physician’s perspective on designing services and supports for people with developmental disabilities who wish to receive care in a generic office.

Individual Program Planning teams can assess whether care in a generic practice is a good fit for a person’s needs. Generic primary care offices are designed for speed and efficiency. Productivity is usually measured by visit volume. While it is often possible to accommodate a few patients who require a 30 minute appointment, if a patient requires more time than this, patient flow is disrupted. Because health care providers generally do not have protected time for funding for care coordination, patients who need significant, ongoing care coordination are difficult to accommodate in a generic practice. This work usually cannot be completed after hours. Patients who might be better served with a special practice model may include those who have:

1. Difficulty waiting.
2. Behaviors that limit cooperation.
3. Special medical problems.
4. Multiple caregivers or complex interdisciplinary teams.
5. Multiple specialists.
6. Dual diagnosis.
7. Challenges that prevent getting fully undressed and safely onto an exam table within five-ten minutes.
8. Communication challenges that make diagnosis dependent on direct observation or that increase the time it takes to collect a history by more than five to ten minutes.

Arranging funding for health care requires more than an insurance card. It requires understanding the limits and terms of an insurance contract and pursuing appeals when services are denied. People with developmental disabilities frequently need services, medications and referrals that require authorization. Providers may provide recommendations and documentation of medical need, but patients file appeals and complaints in order to access their insurance benefits. Patients may also need funding for services that are not covered by insurance. Individual program plan teams can assign the responsibility for assisting with these appeals to a specific individual.

Even patients with strong intellectual and verbal skills can sometimes have difficulty interpreting the sensations in their body. Patients and caregivers usually need to be explicitly taught which sensations or signs indicate a medical problem. Teams can develop a plan to evaluate the seriousness and acuity and how to communicate with someone who can help. Teams can also develop plans for caregivers with other responsibilities who may need coverage to attend to a medical urgency. Without this preplanning, urgent care may be delayed.

Medical summaries can include information on how pain or other chronic medical problems have presented in the past. If a patient does not reliably exhibit typical pain behavior, it is helpful for caregivers and providers to have that information. When needed, patients with communication challenges can be pre-taught non-verbal methods for communicating location and severity of pain.

Patients and caregivers who find medical visits uncomfortable or challenging sometimes avoid routine health care visits. Improving a patient’s comfort with medical visits, however, often requires desensitization. To increase comfort, patients with disabilities usually require more frequent visits. This also allows the provider to concentrate on fewer medical and administrative issues at one time. To maximize provider-patient relationships, not every visit should involve uncomfortable waiting or exams and multiple medical complaints.

Maintaining a medical notebook is critical. Medical notebooks can be updated prior to a patient transferring to a new doctor. Patients or caregivers maintain visit, symptom and data logs. Without a record of baseline behavior, function and health status, it may not be possible for a health care provider or caregiver to recognize illness. Carefully organized information on studies, assessments, and responses to treatment can save money and improve quality. Discharge summaries are also helpful. The notebook may contain contact information for others on the interdisciplinary team and procedures for obtaining informed consent. Health care providers can take primary responsibility for updating a medical summary. This service is not typically covered by insurance. Charges for completing forms and reports are becoming more common. Funding may need to be arranged for this service.

Providers who make accommodations for patients with disabilities may loose money on the transaction. Therefore, it is important for patients to minimize the financial loss by being on time to appointments and avoiding missed appointments. Reliable transportation and assistance with arranging logistics may be planned.

While health care providers can be expected to try to accommodate communication challenges, patients can help doctors by providing information on how best to communicate. Patients often benefit from a health advocate attending appointments especially if the accuracy of medical information provided by the patient is not reliable, or a patient needs help understanding complex medical recommendations and instructions. Patients may also need help identifying conflicts of interest and requesting a independent or second opinions.

Patients often need preparation in order to cooperate with medical exams. Sometimes patients are better able to cooperate with a familiar support person present or in a familiar setting. Teams can assess a patient’s ability to cooperate and design health care services and supports accordingly. Individual program planning teams can identify health-related services that may be best provided in community settings or in the home. These services may include sex and drug education, first aid, dental hygiene, physical education, general health education and training in parenting skills.

Finally, adhering to medical treatments usually requires support. Explicit protocols are helpful to monitor adverse treatment effects. Patients may need help taking medication and modifying recommendations. Although providers may provide information on common responses to a treatment, it isn’t possible to predict and develop a protocol for every possible outcome. Monitoring effects of treatment requires some judgment and decision making on the part of the patient or their caregiver. Strict adherence to medical recommendations may be painful, uncomfortable, inconvenient, intrusive, or expensive. A plan can be developed to help a person modify a treatment plan when perfect adherence to medical recommendations is not warranted.

Effective community-based health care using generic services requires careful planning. Despite good intentions, if a patient lacks the supports necessary to uphold their responsibilities in the provider-patient relationship, medical neglect is the likely result.

Dr. Clarissa Kripke is Associate Clinical Professor of Family and Community Medicine at University of California, San Francisco. Dr. Kripke practices full scope family medicine in the family medicine faculty teaching practice. She provides home care for community-dwelling patients with developmental disabilities and complex medical needs.