- Email: [email protected]
Managed care and children with special health care needs
ORIGINAL ARTICLE
PH C
Managed Care and Children With Special Health Care Needs Je a n n e M . R h o a d e s S m u ck e r, P h D, R N , C S , C R N P
D
ABSTRACT Providing care to children with special health care needs within a managed care environment presents special challenges for providers and parents alike. The goal of managed care is to contain costs by encouraging or requiring members to obtain services through a designated network. In managed care programs, children and families may experience limited access to specialized care and services, along with decreased fragmentation inherent in fee-for-service care. For providers, managed care creates financial risk while offering opportunities for acquiring new skills and knowledge. The primary care provider assumes a central role in creating a medical home that links the child and family to a single provider who is an ongoing resource and partner in care. To provide comprehensive, coordinated, family-centered care, the medical home provider must learn about a variety of services available within the community and guide parents in learning how to access the services that meet their child’s needs. Pediatric nurse practitioners can play a significant role in ensuring that children receive the most appropriate care. J Pediatr Health Care. (2001). 15, 3-9.
January/February 2001
uring the past 20 years, health care expenditures in the United States have increased from 8.3% to 16.6% of the Gross Domestic Product (Kohrt, 1999). In an effort to control rising expenditures, both public and private payers have adopted systems of managed care. Such systems focus on controlling health care costs through easy and inexpensive access to primary or preventive care. Whereas children with special health care needs (CSHCN) should receive primary, preventive care like other children, they also require much care that is not inexpensive, primary care. Meeting the needs of CSHCN presents special challenges to both providers and parents within a managed care environment. MANAGED CARE PLANS Although managed care plans take a variety of forms, the unifying characteristic is that persons enrolled in the plan are encouraged or required to obtain care through a network of providers who agree to abide by the rules of the organization and provide care to members at discounted fees. The traditional role of primary care providers (PCPs) in health promotion is supported, while the PCP is also asked to assume the role of “gatekeeper,” overseeing the care of members and determining when resources of a specialist are needed. Like other children, many CSHCN receive health care through employer-based health plans. Increasingly, such health plans take the form of managed care with strong incentives for employees to select managed care plans, if given the choice. The federal and state-funded Medicaid program and State Children’s Health Insurance Program (SCHIP), which provide health care funding for low-income children, also contract with managed care plans in an effort to control costs and increase coordination of care.
Jeanne M. Rhoades Smucker is a Community Access Consultant at Children’s Hospital of Pittsburgh, Pittsburgh, Pa. Reprint requests: Jeanne M. Rhoades Smucker, PhD, RN, CS, CRNP, 1054 Blackforest Rd, Pittsburgh, PA 15235. Copyright © 2001 by the National Association of Pediatric Nurse Associates & Practitioners. 0891-5245/2001/$35.00 + 0 25/1/107883 doi:10.1067/mph.2001.107883
3
PH ORIGINAL ARTICLE C Children with special health care needs often have had access to additional services not offered by their families’ health insurance plan. Medicaid Model Home and Community-based Waivers have made it possible for states to provide Medicaid coverage for some children who might not qualify on the basis of their parents’ income. These waivers, known as the Katie Beckett Waivers, allow children who would otherwise require institutional or hospital care to stay at home when medically possible without having their Medicaid eligibility jeopardized by their parents’ income (Jackson & Vessey, 1996; NICHCY, 1996). Children with chronic conditions and disabilities may also be eligible for Supplemental Security Income if their family income meets guidelines. In most states, persons receiving Supplemental Security Income are automatically eligible for Medicaid. As state Medicaid programs convert to managed care plans, increasing numbers of CSHCN will enter managed care.
PROBLEMS AND POSSIBILITIES The greatest concern voiced by parents of CSHCN and providers alike is the limitation managed care places on access to specialized care and services. CSHCN require frequent monitoring by a physician familiar with the child’s history, whereas managed care plans may restrict the breadth of specialty services, the number of visits, and the choices of providers covered. Early data on Medicaid managed care enrollees found consistent reductions in the probability of visiting a specialist of about 30% to 50% compared with fee-for-service enrollees (Szilagyi, 1998). One of the major means used by managed care plans to control costs is to contract with networks of providers for services at lower costs. Managed care plans have traditionally focused on the health needs of working adults and have displayed a lack of attention to the needs of children. For example, plans may fail to make the effort to ensure that pediatric specialists are included in their provider networks (Ireys, Grason, & Guyer, 1996). Families may also have to choose between a network that includes their child’s specialist and one that includes their child’s PCP. For example, the parents of a child with a congenital heart condition may
4
Volume 15 Number 1
Smucker
discover that the cardiologist who has been monitoring the child is not in the same network as the family’s pediatrician. If the family has a choice of plans, it will be necessary to choose which provider will continue to care for the child. In some cases, a child’s specialist may be authorized by the plan to serve as the child’s PCP. However, assuming this role means that the specialist becomes responsible for all aspects of primary care, including routine health maintenance and management of common pediatric medical conditions. Family Voices has prepared a detailed brochure to help parents make sense of their options under managed care. The brochure includes lists of questions parents should ask as they
M
anaged care plans
have traditionally focused on the health needs of working adults and have displayed a lack of attention to the needs of children.
select a managed care plan. The brochure can be obtained from Family Voices, PO Box 769, Algodones, NM 87001; Web site: www.familyvoices.org. In spite of the aforementioned risks, managed care also has the potential to decrease the duplication, gaps, and fragmentation of care inherent in feefor-service plans. Linking the child with a PCP helps to ensure coordination of care, attention to preventive health care, and attention to continuity of care (Alliance for Health Reform, 1997; Ireys et al., 1996; New England SERVE, 1997). Centralized coordination of care for CSHCN provides an opportunity to develop guidelines for care and outcome measures for specific health conditions affecting children. However, Ireys et al. (1996) pointed out
that more than 200 chronic conditions and disabilities affect children and youth, including asthma, diabetes, sickle cell anemia, spina bifida, epilepsy, and autism. Except for asthma, most of these conditions are rare, making it difficult for any managed care plan to accumulate sufficient data related to any one condition to support specific guidelines. The PCP assumes the responsibility of providing or ensuring the delivery of comprehensive preventive, acute, and chronic care. The financial incentives of current managed care plans may work against the interests of CSHCN. Most of these incentives serve to shift financial risk from the insurance company to the provider. The financial incentives to withhold services inherent in provider risk-bearing arrangements have the potential of causing delays (or even denial) of specialist care for children with chronic conditions (Hughes & Luft, 1998), creating frustration for providers committed to providing the most appropriate care. Managed care can provide an opportunity for PCPs to develop new skills and knowledge as they work with specialists to coordinate the care of CSHCN. Because of the pivotal role of the PCP in managing the medical care of the child, it is increasingly important that specialists and PCPs maintain open and frequent communications regarding the care of CSHCN. Clinical guidelines that are specific to the conditions of children in the PCP’s practice may be shared, increasing the practitioner’s confidence in providing specialized care. State Medicaid programs dictate that managed care companies include case managers for CSHCN as a condition of their contract with the state. These case managers work with the families and providers to help the family access needed services within their network, whenever possible, and from other sources, if the service is not provided by the company. In one case, it was noted in utilization review that a child’s equipment was frequently being repaired or replaced. Rather than simply refusing to pay for the equipment, the case manager was notified. The case manager discovered that both the child and her equipment were being seriously neglected. The case manager was then able to enlist the help of child pro-
JOURNAL OF PEDIATRIC HEALTH CARE
PH ORIGINAL ARTICLE C tective services to ensure that the child would receive safe care.
CAPITATION AND RISK ADJUSTMENT The use of capitation shifts the level of financial risk from the purchaser of health care to the providers by paying a fixed dollar amount per member to deliver care, no matter how much or how little care is rendered. Whereas many providers are capitated for only the routine primary care they provide in their offices, a growing number of plans are paying a fixed monthly payment for services that may include specialty and hospital care (American Academy of Pediatrics, 1997). Because coordinating the care for CSHCN requires a greater investment of time and personnel, a provider who cares for a larger share of CSHCN does so at a greater financial cost. This situation creates a disincentive to serve this population and penalizes providers who become most proficient in caring for CSHCN. To decrease the potential risk to both the CSHCN and their primary providers, plans and providers are beginning to explore ways to adjust risks. Although capitated providers are not reimbursed for the specific services they provide, capitation arrangements are changing at a fast pace. Providers can support the development of equitable risk adjustment plans by maintaining a database that accounts for all services actually provided, including CPT codes for prolonged service, care plan oversight, team conferences, telephone calls, preventive services, and consultations (Kohrt, 1999). With adequate data, plans can create financial rewards for PCPs who care for children with complex conditions, rather than penalizing them for serving this special population. Plans may even consider offering rewards to providers who care for a significant number of CSHCN and achieve reductions in emergency room use or achieve high scores on family-satisfaction surveys related to special needs (Fox & McManus, 1998). The use of “carve-outs” is another approach to risk adjustment that may be taken by state Medicaid plans. Section 1115 of the Social Security Act provides states with some flexibility in implementing the federal requirement that Medicaid recipients enroll
JOURNAL OF PEDIATRIC HEALTH CARE
Smucker
in managed care plans. States may choose to carve out sets of services or defined populations from the mainstream capitated managed care plans. If an organized system of care for a particular set of services, such as mental health care, already exists in the state and these providers are interested in maintaining their role within the service system, the service may be carved out from the mainstream managed care plans. Population carve-outs provide the majority of health services to an identified population with similar disabling conditions, such as HIV/AIDS, through a separate service system that specializes in treating the disabling condition experienced by the defined population. Carve-outs may result from
B
roadly defined,
children with chronic conditions make up 20% to 30% of all children.
a lack of interest or capacity in the mainstream plans to serve a particular population, a desire to maintain existing systems of services to special populations, or a desire to consolidate the planning and financing of a range of health and social services that have been fragmented in traditional feefor-service plans (Bachman & Burwell, 1997). Service carve-outs provide an opportunity to develop service systems that are tailored to specific population or service needs. However, they also create a challenge for the primary care providers who serve as managers of care. Once a referral is made for special services, ongoing communication is needed between providers to avoid the fragmentation, duplication, and gaps in services that managed care is intended to address. When a family begins to receive mental health services for their child through a carvedout behavioral health plan, the PCP may not be required to authorize services and thus may not be informed
about changes in the child’s condition that require the PCP’s attention.
NECESSARY PARTNERSHIPS The Healthy People 2010 objectives recommend that CSHCN receive care through a service system that is an “organized network of comprehensive, community-based, coordinated, and family-centered services” (US Department of Health and Human Services, 1998, p. 12-33). These children need access to health promotion and preventive services, as well as specialized diagnostic and therapeutic services and habilitation and rehabilitation services. They also need early intervention, educational, vocational, and mental health services and support for their families. Broadly defined, children with chronic conditions make up 20% to 30% of all children. The Maternal Child Health Bureau (MCHB) defined CSHCN as “those who have or are at elevated risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that usually required by children” (American Academy of Pediatrics, 1997, p. 4). Provision of comprehensive, coordinated care requires that providers of health care know about available services and work with other providers of care for CSHCN. The MCHB of the Department of Health and Human Services provides states with federal block grants designated for services to CSHCN. Although MCHB funding includes certain guidelines, great variation exists from state to state in how the matching fund grants are used. Some states have developed comprehensive programs to coordinate care of a broad spectrum of CSHCN. Other states provide direct services to specific populations, such as children with phenylketonuria. Increasingly, the focus has been on helping families connect with other families. Each state must offer parents a toll-free number for information and referral services (New England SERVE, 1992). This resource can be tapped by providers as well as by parents and can be helpful in locating a wide range of services, such as camps and recreation and conditionspecific support groups. A major challenge for providers is coordinating services between the managed care organization and other sys-
January/February 2001
5
PH ORIGINAL ARTICLE C tems, such as special education, social services, and federal and state maternal-child health programs. Providers must cultivate relationships with the various providers of services to children within the community. Contact with interagency groups within the community can facilitate the process. Local interagency coordinating committees bring together parents and community agencies involved in early intervention (Mallory, 1996). The Child and Adolescent Service System Program works to improve multi-agency services for children who have or are in danger of developing emotional and mental disorders (Karp, 1996). Both of these organizations are mandated to include parents in a decision-making capacity. Other organizations that provide services to CSHCN include the ARC (formerly the Association for Retarded Citizens), United Cerebral Palsy, the local school system, the Health Department, and parent-teacher organizations. Primary care providers should develop listings of agencies, their services, and contact people. Particularly useful is a “short list” of parents and community service providers who are especially knowledgeable about services available in the local community. These persons can be contacted when the provider is unsure where to turn for needed services.
THE MEDICAL HOME The concept of a medical home is not new to pediatric care. The medical home links the child and family to a single provider in the family’s community who is an ongoing resource and partner with the family in the care of the child (American Academy of Pediatrics, 1992). Managed care that mandates the central role of the PCP is forcing the implementation of a concept that has been viewed as ideal but unrealistic or impractical in the care of CSHCN. Decentralization of care requires that tertiary care centers and specialists sort out those portions of the child’s care that can best be provided in the local community through the medical home. Medical home providers assume a central role in coordinating the various aspects of the child’s care. (Additional information on the Medical Home Program for Children with Special Needs may be obtained by calling [800] 433-9015, ext. 7081 or 7789,
6
Volume 15 Number 1
Smucker
or by sending an e-mail request to: [email protected].) Families are the constant in the life of children, and their centrality must be recognized in planning the care of CSHCN. Parents are present for their children across settings and throughout time. They are present in the provision of medical care, when an education plan is made, and in planning for the child’s adult living situation. The medical home is not possible without collaboration with parents. One parent pointed out that collaboration requires mutual utilization of each partner’s knowledge, talents, experience, and expertise toward a common goal. Collaborators help define the problem together, as well as solving the problem together (Poyadue, 1994). Parents can be powerful advocates for their children and strong allies of
A
dditional information
about the Medical Home Program for Children with Special Needs may be obtained by calling (800) 433-9015, ext. 7081 or 7789.
the health professionals who care for their children; thus it is important to help them identify their goals and their strengths. Parents have hopes and dreams for each of their children. These hopes and dreams can form the basis for a vision statement. Articulating a vision that is better in some important way than what exists or is expected to exist empowers parents for the complex tasks of parenting their child with special needs (Tomko, 1996). Parents also know the resources available in their family environment such as church communities, neighborhood groups, and extended family. Professionals who help manage the child’s
care often overlook such resources. As parents and professionals work together to formulate goals and plans, the family’s resources and supports can articulate with the formal supports available within the community. Managing the care and services needed by any one child with special needs becomes complex and confusing. Parents can be helped to coordinate the multiple providers and services through the use of a portable care plan. The care plan helps the parent keep records of providers, appointments, and the child’s medical history. It provides a means for parents to keep track of questions for providers and their own goals and plans. Parents may add such items as discharge summaries, test results, home-care orders, and copies of individual education plans (IEPs). Because the parent is, in the final analysis, the custodian of the child’s information and plan, the portable care plan facilitates this role. The medical home should provide families with access to parent networks. Contact with other parents often provides the practical advice parents need to deal with the day-to-day experience of caring for their children’s special needs, such as the best way to keep an ostomy bag from leaking or which communication device is least likely to malfunction. Experienced parents have a vast amount of information to share with new parents. They also find in other parents someone to validate the difficulty of their experience (Poyadue, 1994). Parents are eager to help other parents and find that the opportunity to help others gives new meaning to their own experience. Federal law requires that every child receiving special education and related services have a written plan of service—the Individual Family Service Plan for children from birth through 2 years of age and the IEP for children from 3 to 21 years of age. The PCP may participate in the assessment and development of a plan in person, by phone, or by mail. The PCP can help the family think through the needs of their child and the options they would like to have considered in the development of an educational plan. Parents are often unaware that they are key members of the planning team and that the final IEP or Individual Family Service Plan must meet their approval.
JOURNAL OF PEDIATRIC HEALTH CARE
PH ORIGINAL ARTICLE C If the parents are not in agreement with the plan, they should be encouraged to work with local advocates who are familiar with local school systems and state education laws and can provide parents with information and guidance. These advocates may be located through the local ARC or the mental health association and are usually parents who have already learned to navigate the system. Two federal statutes provide the guidelines for provision of health care services by schools—the Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act (Thomas & Hawke, 1999). Under the Individuals with Disabilities Education Act, school districts are responsible for providing free, appropriate public education to all children in the least restrictive environment. This law requires that special education and related services be made available to all children and youth with disabilities that require them. A Supreme Court ruling on March 3, 1999, determined that a school district had to pay for oneon-one nursing care for Garrett F, who required tracheotomy suction, repositioning, assistance with feeding, ventilator setting checks, assessment of respiratory status, catheterization, and assessment for autonomic hyperreflexia (Katsiyannis & Yell, 2000). Section 504 of the Rehabilitation Act, the civil rights law protecting individuals with disabilities from discrimination by recipients of federal financial assistance, is less demanding on schools. This law requires that schools provide the accommodations needed to allow the child to participate in an educational program comparable to that to which they would otherwise be entitled unless the accommodations would result in a “fundamental alteration of the nature of the program” or impose an “undue financial burden” on the school system (Thomas & Hawke, 1999). Decisions about which services schools should provide often hinges on the distinction between medical and health-related services, a distinction that becomes less clear with increasingly complex needs. Medical services are considered related services only if a licensed physician provides them for diagnosis and evaluation to determine the child’s needs for special education and related services. Schools are not
JOURNAL OF PEDIATRIC HEALTH CARE
Smucker
expected to provide physician services unless they involve diagnosis or evaluation. Schools are required to provide “health related services” if a service can be provided by a school nurse or a layperson, such as a teacher, with minimal training (Smith-Davis & Littlejohn, 1991). As children with increasingly complex medical conditions participate in public schools, the decision regarding who will pay for such services as oneto-one nursing care for a child who is ventilator-dependent becomes equally complex. The 1988 amendments to the Social Security Act authorize Medicaid reimbursement for Medicaid-covered related services in the IEPs of Medicaid-eligible students with disabilities.
A
s Medicaid contracts
with managed care for services, parents increasingly find themselves caught between school systems and managed care plans regarding which entity is responsible to provide care while a child is in school.
Treatments recommended through the Early and Periodic Screening, Diagnosis and Treatment process are likewise covered through Medicaid. As Medicaid contracts with managed care for services, parents increasingly find themselves caught between school systems and managed care plans regarding which entity is responsible to provide care while a child is in school. School systems may also seek thirdparty payment for services from families’ private insurance. However, schools may not compel parents of chil-
dren with disabilities to file insurance claims that would create the threat of financial loss for the parents (SmithDavis & Littlejohn, 1997). Financial loss would come from spending down lifetime limits on coverage, increases in premiums, and the need to pay for deductibles.
GATEKEEPER ROLE Because of the PCP’s responsibility to make referrals to specialists, the PCP is placed in the role of gatekeeper, the one responsible for ensuring that all enrolled members get “the right service at the right time in the right place” (Conger, 1999, p. 53). Because the goal of managed care is to provide health care to a defined population within a predetermined budget, the provider faces the challenges of determining the “medical necessity” of the care, balancing the needs of individuals with the needs of broader populations, and developing and coordinating a creative but cost-conscious plan of care. The term “medical necessity” refers to the legal authority of a managed care plan or other purchaser of health care to determine whether a specific service should be covered (Ireys, Wehr, & Cooke, 1999). Services are generally considered to be medically necessary if evidence exists that they will significantly improve the person’s health, although pediatric literature proving effectiveness of many services is limited or nonexistent. Because the population of children with certain disorders is relatively small, only a few specialists may know outcomes of new treatments (Fox & McManus, 1998; Ireys, et al., 1999). Furthermore, many CSHCN need health or medical services that will maintain their day-to-day function without necessarily improving their health status. Although Medicaid Early and Periodic Screening, Diagnosis and Treatment services include those necessary “to prevent, diagnose, correct, or ameliorate a physical or mental illness or condition” (Fox & McManus, 1998, p. 109), services that are necessary to prevent the deterioration of a condition and to promote the development or maintenance of ageappropriate functioning may not be considered medically necessary. In addition to determining whether a service is medically necessary, it is also necessary to know whether a particular service is covered by the plan
January/February 2001
7
PH ORIGINAL ARTICLE C and under what circumstances it is covered. The length of the particular service may depend on whether a goal is met or it may depend on reaching a dollar amount spent on the service. For example, the plan may limit the number of physical therapy visits or it may limit physical therapy to that which brings about a measurable improvement in the child’s condition. When a family is notified of limitation or denial of services, the managed care plan should include information advising the family on the procedure to appeal the ruling. A number of families have found that a particular service is approved after several appeals. To assist the family in the appeal, the provider should review the policy for its definition of “medical necessity.” Appeals should use policy language to support the medical necessity of the requested service. Managed care has transferred to providers the ethical dilemma of meeting their responsibility to individual patients while simultaneously considering the needs of a larger population of children and the resources available to meet them (Finkelstein, 1998; Ireys et al., 1999). Savage (1999) discussed the two basic ethical principles that must be considered. The principle of autonomy would dictate supporting the parents’ choice of what they see as best for their child. The principle of justice involves stewardship of limited resources, providing the greatest good for the greatest number of people. Whereas stewardship of resources must be considered, the provider-patient relationship dictates that the provider serves as patient advocate in obtaining the most appropriate services. Serving as an advocate requires creativity and collaborative relationships with others who provide services for CSHCN. Feinberg and Beyer (1999) proposed a sequential paradigm for planning services that makes central the individual needs of the child without ignoring the issue of distribution of services. This paradigm starts with the issues of concern rather than the services that might be delivered. Family priorities provide direction as a plan is tailored to the priority goals. The only services or disciplines involved are those that have direct bearing on the identified problems. Such an approach requires that the provider work with
8
Volume 15 Number 1
Smucker
the family at setting goals and determining the most appropriate and realistic means of achieving these goals. Negotiating with payers for services requires that information be given in terms of cost-effectiveness. Communications requesting services should include documentation of symptomatology, working diagnosis, recommendations, treatment goals, and a plan for re-evaluation (Savage, 1999). An understanding of services provided and conditions for these services allow the provider to word requests in such a way that they are most likely to receive consideration. PCPs should also negotiate for the inclusion of appropriate
S
ervices are generally
considered to be medically necessary if evidence exists that they will significantly improve the person’s health, although pediatric literature proving effectiveness of many services is limited or nonexistent.
pediatric specialists within the network of providers. Some services needed to meet the identified goals may be available within the local community. Two benefits are obtained by using community services. First, these services will not deplete any limits set by the health plan. Use of community services also helps to provide the services within an inclusive environment, rather than separating the CSHCN from other children within the community. Nutrition education may be provided through the state extension service, where needs of the entire family may be
addressed. Aqua therapy may be obtained at a local community center where the child also benefits from interactions with typical children.
NURSE PRACTITIONERS AND THE MEDICAL HOME FOR CSHCN Pediatric nurse practitioners (PNPs) have a role in providing primary care and case management to children with special health care needs in a variety of settings. The U Special Kids Program (Kelly, 1999) helps to keep medically fragile children at home and helps their families maintain control of their care. Center-based PNPs play a central role in collaborating with parents and community-base providers to reduce hospital days and increase illness management. Through the REACH program (Martinez, Schreiber, & Hartman, 1991), PNPs provide care to chronically ill children at home, including case management, management of chronic illness, management of minor pediatric illness, and management of well child care. The number of emergency department visits decreased and compliance with medical regimens increased with in-home primary care. PNPs, with backgrounds in clinical research, play a significant role in ensuring that CSHCN receive the most appropriate care through managed care plans (Richman, 1999). The PNP provides proactive case management of children who are high utilizers of the health care system, using more frequent contact to ensure that the children receive the correct care in the appropriate setting. PNPs develop comprehensive educational programs and engage families as active partners in the home management of the condition. PNPs help gather data that support evidence-based management of the unique conditions in this special population. In addition to clinical outcomes, evaluation of effectiveness should include functional outcomes for the child and caregivers, patient and parent satisfaction, and cost and utilization outcomes such as number of admissions, length of stay, or number of emergency department visits.
CONCLUSION As managed care continues to evolve, it is imperative that the needs of CSHCN be considered. CSHCN can benefit from
JOURNAL OF PEDIATRIC HEALTH CARE
PH ORIGINAL ARTICLE C the coordination and management of care offered by managed care. However, there is also great risk that their unique needs will not be adequately addressed. Parents and providers must be actively involved in defining services and evaluating the outcomes.
REFERENCES Alliance for Health Reform. (1997). Managed care & vulnerable Americans: Children with special healthy care needs. Washington, DC: Alliance for Health Reform. American Academy of Pediatrics. (1992). The medical home. Pediatrics, 90, 774. American Academy of Pediatrics. (1997). Managed care and children with special health care needs. Elk Grove Village, IL: Author. Bachman, S., & Burwell, B. (1997). Medicaid carveouts: Policy and programmatic considerations. Princeton, NJ: Center for Health Care Strategies, Inc. Conger, M. M. (1999). Managed care: Practice strategies for nursing. Thousand Oaks, CA: Sage. Feinberg, E., & Beyer, J. (1999). Blending perspectives: Mediating differences in frequency/intensity recommendations. Paper presented at the 1999 Statewide Early Intervention Conference, Hershey, PA. Finkelstein, J. A. (1998). Commentary: A physician’s perspective. The Future of Children, 8, 138-140. Fox, H. B., & McManus, M. A. (1998). Improving state medicaid contracts and plan practices for children with special needs. The Future of Children, 8, 105-118. Hughes, D. C., & Luft, H. S. (1998). Managed care and children: An overview. The Future of Children, 8, 25–38. Ireys, H. T., Grason, H. A., & Guyer, B. (1996). Assuring quality of care for children with spe-
Smucker
cial needs in managed care organizations: Role for pediatricians. Pediatrics, 98, 178-185. Ireys, H. T., Wehr, E., & Cooke, R. E. (1999). Assuring high quality of care for persons with developmental disabilities and other special health care needs: Specifications for a definition of medical necessity. Washington, DC: National Policy Center for Children with Special Health Care Needs. Jackson, P. L., & Vessey, J. A. (1996). Primary care of the child with a chronic condition. St. Louis, MO: Mosby. Karp, N. (1996). Individualized wrap-around services for children with emotional, behavior, and mental disorders. In G. H. S. Singer, L. E. Powers, & A. L. Olson (Eds.), Redefining family support: Innovations in public-private partnerships (pp. 291-310). Baltimore, MD: Brookes. Katsiyannis, A., & Yell, M. L. (2000). The Supreme Court and School Health Services: Cedar Rapids v. Garret F. Exceptional Child, 66, 317-326. Kelly, A. (1999). U Special Kids: A win, win, win situation. In The second 5 years (pp. 10-12). Minneapolis, MN: Institute for Health & Disability, University of Minnesota. Kohrt, A. (1999). Problems & barriers, benefits & solutions: The medical home, working with managed care for children with special health care needs. Paper presented at the 1999 Tri-Regional Workshop, Children with Special Health Care Needs in Managed Care: Strengthening Partnerships to Assure Quality Services, Baltimore, MD. Mallory, B. L. (1996). Early intervention and family support. In G. H. S. Singer, L. E. Powers, & A. L. Olson (Eds.), Redefining family support: Innovations in public-private partnerships (pp. 151179). Baltimore, MD: Brookes. Martinez, N. H., Schreiber, M. L., & Hartman, E. H. (1991). Pediatric nurse practitioners: Primary care providers and case managers for chronically ill children at home. Journal of Pediatric Health Care, 5, 291-297.
New England SERVE. (1992). Paying the bills: Tips for families on financing health care for children with special needs. Boston: New England SERVE. New England SERVE. (1997). Assessing the quality of managed care for children with special health care needs: Summary of a regional survey of families, primary care providers & managed care organizations in New England. Boston: New England SERVE. National Information Center for Children and Youth with Disabilities. (1996). Paying the medical bills (NICHCY briefing paper). Washington, DC: National Information Center for Children and Youth with Disabilities. Poyadue, F. S. (1994). Collaboration defined mathematically. In R. B. Darling & M. I. Peters (Eds.), Families, physicians, and children with special health needs: Collaborative medical education models (pp. 17-27). Westport, CT: Auburn House. Richman, M. J. (1999). Disease management: What does it mean for nurse practitioners? Journal of Pediatric Health Care. 13, 201-203. Savage, T. (1999). Ethics, the outpatient pediatric nurse and managed care. Pediatric Nursing, 25, 197-199. Smith-Davis, J., & Littlejohn, W. R. (1991). Related services for school-aged children with disabilities. NICHCY News Digest, 1, 1-24. Szilagyi, P. G. (1998). Managed care for children: Effect on access to care and utilization of health services. The Future of Children, 8, 39-59. Thomas, S. B., & Hawke, C. (1999). Health-care services for children with disabilities: Emerging standards and implications. The Journal of Special Education, 32, 226-237. Tomko, C. F. (1996). Vision building. Quakertown, PA: Kids Together, Inc. US Department of Health and Human Services. (1998). Healthy People 2010 Objectives: Draft for Public Comment. Washington, DC: Office of Public Health and Science.
CALL FOR MANUSCRIPTS The Journal of Pediatric Health Care welcomes manuscripts related to pediatric clinical practice (ambulatory care, primary care, home health care, school health, inpatient care), health care policy, or role issues relevant to the pediatric nurse practicing in an expanded role. Please submit manuscripts to the Editor at the following address: Bobbie Crew Nelms, PhD, RN, CPNP 3133 Barbara St San Pedro, CA 90731 For details about the Journal’s editorial policy and manuscript preparation, see the Information for Authors pages.
JOURNAL OF PEDIATRIC HEALTH CARE
January/February 2001
9
PH C
Managed Care and Children With Special Health Care Needs Je a n n e M . R h o a d e s S m u ck e r, P h D, R N , C S , C R N P
D
ABSTRACT Providing care to children with special health care needs within a managed care environment presents special challenges for providers and parents alike. The goal of managed care is to contain costs by encouraging or requiring members to obtain services through a designated network. In managed care programs, children and families may experience limited access to specialized care and services, along with decreased fragmentation inherent in fee-for-service care. For providers, managed care creates financial risk while offering opportunities for acquiring new skills and knowledge. The primary care provider assumes a central role in creating a medical home that links the child and family to a single provider who is an ongoing resource and partner in care. To provide comprehensive, coordinated, family-centered care, the medical home provider must learn about a variety of services available within the community and guide parents in learning how to access the services that meet their child’s needs. Pediatric nurse practitioners can play a significant role in ensuring that children receive the most appropriate care. J Pediatr Health Care. (2001). 15, 3-9.
January/February 2001
uring the past 20 years, health care expenditures in the United States have increased from 8.3% to 16.6% of the Gross Domestic Product (Kohrt, 1999). In an effort to control rising expenditures, both public and private payers have adopted systems of managed care. Such systems focus on controlling health care costs through easy and inexpensive access to primary or preventive care. Whereas children with special health care needs (CSHCN) should receive primary, preventive care like other children, they also require much care that is not inexpensive, primary care. Meeting the needs of CSHCN presents special challenges to both providers and parents within a managed care environment. MANAGED CARE PLANS Although managed care plans take a variety of forms, the unifying characteristic is that persons enrolled in the plan are encouraged or required to obtain care through a network of providers who agree to abide by the rules of the organization and provide care to members at discounted fees. The traditional role of primary care providers (PCPs) in health promotion is supported, while the PCP is also asked to assume the role of “gatekeeper,” overseeing the care of members and determining when resources of a specialist are needed. Like other children, many CSHCN receive health care through employer-based health plans. Increasingly, such health plans take the form of managed care with strong incentives for employees to select managed care plans, if given the choice. The federal and state-funded Medicaid program and State Children’s Health Insurance Program (SCHIP), which provide health care funding for low-income children, also contract with managed care plans in an effort to control costs and increase coordination of care.
Jeanne M. Rhoades Smucker is a Community Access Consultant at Children’s Hospital of Pittsburgh, Pittsburgh, Pa. Reprint requests: Jeanne M. Rhoades Smucker, PhD, RN, CS, CRNP, 1054 Blackforest Rd, Pittsburgh, PA 15235. Copyright © 2001 by the National Association of Pediatric Nurse Associates & Practitioners. 0891-5245/2001/$35.00 + 0 25/1/107883 doi:10.1067/mph.2001.107883
3
PH ORIGINAL ARTICLE C Children with special health care needs often have had access to additional services not offered by their families’ health insurance plan. Medicaid Model Home and Community-based Waivers have made it possible for states to provide Medicaid coverage for some children who might not qualify on the basis of their parents’ income. These waivers, known as the Katie Beckett Waivers, allow children who would otherwise require institutional or hospital care to stay at home when medically possible without having their Medicaid eligibility jeopardized by their parents’ income (Jackson & Vessey, 1996; NICHCY, 1996). Children with chronic conditions and disabilities may also be eligible for Supplemental Security Income if their family income meets guidelines. In most states, persons receiving Supplemental Security Income are automatically eligible for Medicaid. As state Medicaid programs convert to managed care plans, increasing numbers of CSHCN will enter managed care.
PROBLEMS AND POSSIBILITIES The greatest concern voiced by parents of CSHCN and providers alike is the limitation managed care places on access to specialized care and services. CSHCN require frequent monitoring by a physician familiar with the child’s history, whereas managed care plans may restrict the breadth of specialty services, the number of visits, and the choices of providers covered. Early data on Medicaid managed care enrollees found consistent reductions in the probability of visiting a specialist of about 30% to 50% compared with fee-for-service enrollees (Szilagyi, 1998). One of the major means used by managed care plans to control costs is to contract with networks of providers for services at lower costs. Managed care plans have traditionally focused on the health needs of working adults and have displayed a lack of attention to the needs of children. For example, plans may fail to make the effort to ensure that pediatric specialists are included in their provider networks (Ireys, Grason, & Guyer, 1996). Families may also have to choose between a network that includes their child’s specialist and one that includes their child’s PCP. For example, the parents of a child with a congenital heart condition may
4
Volume 15 Number 1
Smucker
discover that the cardiologist who has been monitoring the child is not in the same network as the family’s pediatrician. If the family has a choice of plans, it will be necessary to choose which provider will continue to care for the child. In some cases, a child’s specialist may be authorized by the plan to serve as the child’s PCP. However, assuming this role means that the specialist becomes responsible for all aspects of primary care, including routine health maintenance and management of common pediatric medical conditions. Family Voices has prepared a detailed brochure to help parents make sense of their options under managed care. The brochure includes lists of questions parents should ask as they
M
anaged care plans
have traditionally focused on the health needs of working adults and have displayed a lack of attention to the needs of children.
select a managed care plan. The brochure can be obtained from Family Voices, PO Box 769, Algodones, NM 87001; Web site: www.familyvoices.org. In spite of the aforementioned risks, managed care also has the potential to decrease the duplication, gaps, and fragmentation of care inherent in feefor-service plans. Linking the child with a PCP helps to ensure coordination of care, attention to preventive health care, and attention to continuity of care (Alliance for Health Reform, 1997; Ireys et al., 1996; New England SERVE, 1997). Centralized coordination of care for CSHCN provides an opportunity to develop guidelines for care and outcome measures for specific health conditions affecting children. However, Ireys et al. (1996) pointed out
that more than 200 chronic conditions and disabilities affect children and youth, including asthma, diabetes, sickle cell anemia, spina bifida, epilepsy, and autism. Except for asthma, most of these conditions are rare, making it difficult for any managed care plan to accumulate sufficient data related to any one condition to support specific guidelines. The PCP assumes the responsibility of providing or ensuring the delivery of comprehensive preventive, acute, and chronic care. The financial incentives of current managed care plans may work against the interests of CSHCN. Most of these incentives serve to shift financial risk from the insurance company to the provider. The financial incentives to withhold services inherent in provider risk-bearing arrangements have the potential of causing delays (or even denial) of specialist care for children with chronic conditions (Hughes & Luft, 1998), creating frustration for providers committed to providing the most appropriate care. Managed care can provide an opportunity for PCPs to develop new skills and knowledge as they work with specialists to coordinate the care of CSHCN. Because of the pivotal role of the PCP in managing the medical care of the child, it is increasingly important that specialists and PCPs maintain open and frequent communications regarding the care of CSHCN. Clinical guidelines that are specific to the conditions of children in the PCP’s practice may be shared, increasing the practitioner’s confidence in providing specialized care. State Medicaid programs dictate that managed care companies include case managers for CSHCN as a condition of their contract with the state. These case managers work with the families and providers to help the family access needed services within their network, whenever possible, and from other sources, if the service is not provided by the company. In one case, it was noted in utilization review that a child’s equipment was frequently being repaired or replaced. Rather than simply refusing to pay for the equipment, the case manager was notified. The case manager discovered that both the child and her equipment were being seriously neglected. The case manager was then able to enlist the help of child pro-
JOURNAL OF PEDIATRIC HEALTH CARE
PH ORIGINAL ARTICLE C tective services to ensure that the child would receive safe care.
CAPITATION AND RISK ADJUSTMENT The use of capitation shifts the level of financial risk from the purchaser of health care to the providers by paying a fixed dollar amount per member to deliver care, no matter how much or how little care is rendered. Whereas many providers are capitated for only the routine primary care they provide in their offices, a growing number of plans are paying a fixed monthly payment for services that may include specialty and hospital care (American Academy of Pediatrics, 1997). Because coordinating the care for CSHCN requires a greater investment of time and personnel, a provider who cares for a larger share of CSHCN does so at a greater financial cost. This situation creates a disincentive to serve this population and penalizes providers who become most proficient in caring for CSHCN. To decrease the potential risk to both the CSHCN and their primary providers, plans and providers are beginning to explore ways to adjust risks. Although capitated providers are not reimbursed for the specific services they provide, capitation arrangements are changing at a fast pace. Providers can support the development of equitable risk adjustment plans by maintaining a database that accounts for all services actually provided, including CPT codes for prolonged service, care plan oversight, team conferences, telephone calls, preventive services, and consultations (Kohrt, 1999). With adequate data, plans can create financial rewards for PCPs who care for children with complex conditions, rather than penalizing them for serving this special population. Plans may even consider offering rewards to providers who care for a significant number of CSHCN and achieve reductions in emergency room use or achieve high scores on family-satisfaction surveys related to special needs (Fox & McManus, 1998). The use of “carve-outs” is another approach to risk adjustment that may be taken by state Medicaid plans. Section 1115 of the Social Security Act provides states with some flexibility in implementing the federal requirement that Medicaid recipients enroll
JOURNAL OF PEDIATRIC HEALTH CARE
Smucker
in managed care plans. States may choose to carve out sets of services or defined populations from the mainstream capitated managed care plans. If an organized system of care for a particular set of services, such as mental health care, already exists in the state and these providers are interested in maintaining their role within the service system, the service may be carved out from the mainstream managed care plans. Population carve-outs provide the majority of health services to an identified population with similar disabling conditions, such as HIV/AIDS, through a separate service system that specializes in treating the disabling condition experienced by the defined population. Carve-outs may result from
B
roadly defined,
children with chronic conditions make up 20% to 30% of all children.
a lack of interest or capacity in the mainstream plans to serve a particular population, a desire to maintain existing systems of services to special populations, or a desire to consolidate the planning and financing of a range of health and social services that have been fragmented in traditional feefor-service plans (Bachman & Burwell, 1997). Service carve-outs provide an opportunity to develop service systems that are tailored to specific population or service needs. However, they also create a challenge for the primary care providers who serve as managers of care. Once a referral is made for special services, ongoing communication is needed between providers to avoid the fragmentation, duplication, and gaps in services that managed care is intended to address. When a family begins to receive mental health services for their child through a carvedout behavioral health plan, the PCP may not be required to authorize services and thus may not be informed
about changes in the child’s condition that require the PCP’s attention.
NECESSARY PARTNERSHIPS The Healthy People 2010 objectives recommend that CSHCN receive care through a service system that is an “organized network of comprehensive, community-based, coordinated, and family-centered services” (US Department of Health and Human Services, 1998, p. 12-33). These children need access to health promotion and preventive services, as well as specialized diagnostic and therapeutic services and habilitation and rehabilitation services. They also need early intervention, educational, vocational, and mental health services and support for their families. Broadly defined, children with chronic conditions make up 20% to 30% of all children. The Maternal Child Health Bureau (MCHB) defined CSHCN as “those who have or are at elevated risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that usually required by children” (American Academy of Pediatrics, 1997, p. 4). Provision of comprehensive, coordinated care requires that providers of health care know about available services and work with other providers of care for CSHCN. The MCHB of the Department of Health and Human Services provides states with federal block grants designated for services to CSHCN. Although MCHB funding includes certain guidelines, great variation exists from state to state in how the matching fund grants are used. Some states have developed comprehensive programs to coordinate care of a broad spectrum of CSHCN. Other states provide direct services to specific populations, such as children with phenylketonuria. Increasingly, the focus has been on helping families connect with other families. Each state must offer parents a toll-free number for information and referral services (New England SERVE, 1992). This resource can be tapped by providers as well as by parents and can be helpful in locating a wide range of services, such as camps and recreation and conditionspecific support groups. A major challenge for providers is coordinating services between the managed care organization and other sys-
January/February 2001
5
PH ORIGINAL ARTICLE C tems, such as special education, social services, and federal and state maternal-child health programs. Providers must cultivate relationships with the various providers of services to children within the community. Contact with interagency groups within the community can facilitate the process. Local interagency coordinating committees bring together parents and community agencies involved in early intervention (Mallory, 1996). The Child and Adolescent Service System Program works to improve multi-agency services for children who have or are in danger of developing emotional and mental disorders (Karp, 1996). Both of these organizations are mandated to include parents in a decision-making capacity. Other organizations that provide services to CSHCN include the ARC (formerly the Association for Retarded Citizens), United Cerebral Palsy, the local school system, the Health Department, and parent-teacher organizations. Primary care providers should develop listings of agencies, their services, and contact people. Particularly useful is a “short list” of parents and community service providers who are especially knowledgeable about services available in the local community. These persons can be contacted when the provider is unsure where to turn for needed services.
THE MEDICAL HOME The concept of a medical home is not new to pediatric care. The medical home links the child and family to a single provider in the family’s community who is an ongoing resource and partner with the family in the care of the child (American Academy of Pediatrics, 1992). Managed care that mandates the central role of the PCP is forcing the implementation of a concept that has been viewed as ideal but unrealistic or impractical in the care of CSHCN. Decentralization of care requires that tertiary care centers and specialists sort out those portions of the child’s care that can best be provided in the local community through the medical home. Medical home providers assume a central role in coordinating the various aspects of the child’s care. (Additional information on the Medical Home Program for Children with Special Needs may be obtained by calling [800] 433-9015, ext. 7081 or 7789,
6
Volume 15 Number 1
Smucker
or by sending an e-mail request to: [email protected].) Families are the constant in the life of children, and their centrality must be recognized in planning the care of CSHCN. Parents are present for their children across settings and throughout time. They are present in the provision of medical care, when an education plan is made, and in planning for the child’s adult living situation. The medical home is not possible without collaboration with parents. One parent pointed out that collaboration requires mutual utilization of each partner’s knowledge, talents, experience, and expertise toward a common goal. Collaborators help define the problem together, as well as solving the problem together (Poyadue, 1994). Parents can be powerful advocates for their children and strong allies of
A
dditional information
about the Medical Home Program for Children with Special Needs may be obtained by calling (800) 433-9015, ext. 7081 or 7789.
the health professionals who care for their children; thus it is important to help them identify their goals and their strengths. Parents have hopes and dreams for each of their children. These hopes and dreams can form the basis for a vision statement. Articulating a vision that is better in some important way than what exists or is expected to exist empowers parents for the complex tasks of parenting their child with special needs (Tomko, 1996). Parents also know the resources available in their family environment such as church communities, neighborhood groups, and extended family. Professionals who help manage the child’s
care often overlook such resources. As parents and professionals work together to formulate goals and plans, the family’s resources and supports can articulate with the formal supports available within the community. Managing the care and services needed by any one child with special needs becomes complex and confusing. Parents can be helped to coordinate the multiple providers and services through the use of a portable care plan. The care plan helps the parent keep records of providers, appointments, and the child’s medical history. It provides a means for parents to keep track of questions for providers and their own goals and plans. Parents may add such items as discharge summaries, test results, home-care orders, and copies of individual education plans (IEPs). Because the parent is, in the final analysis, the custodian of the child’s information and plan, the portable care plan facilitates this role. The medical home should provide families with access to parent networks. Contact with other parents often provides the practical advice parents need to deal with the day-to-day experience of caring for their children’s special needs, such as the best way to keep an ostomy bag from leaking or which communication device is least likely to malfunction. Experienced parents have a vast amount of information to share with new parents. They also find in other parents someone to validate the difficulty of their experience (Poyadue, 1994). Parents are eager to help other parents and find that the opportunity to help others gives new meaning to their own experience. Federal law requires that every child receiving special education and related services have a written plan of service—the Individual Family Service Plan for children from birth through 2 years of age and the IEP for children from 3 to 21 years of age. The PCP may participate in the assessment and development of a plan in person, by phone, or by mail. The PCP can help the family think through the needs of their child and the options they would like to have considered in the development of an educational plan. Parents are often unaware that they are key members of the planning team and that the final IEP or Individual Family Service Plan must meet their approval.
JOURNAL OF PEDIATRIC HEALTH CARE
PH ORIGINAL ARTICLE C If the parents are not in agreement with the plan, they should be encouraged to work with local advocates who are familiar with local school systems and state education laws and can provide parents with information and guidance. These advocates may be located through the local ARC or the mental health association and are usually parents who have already learned to navigate the system. Two federal statutes provide the guidelines for provision of health care services by schools—the Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act (Thomas & Hawke, 1999). Under the Individuals with Disabilities Education Act, school districts are responsible for providing free, appropriate public education to all children in the least restrictive environment. This law requires that special education and related services be made available to all children and youth with disabilities that require them. A Supreme Court ruling on March 3, 1999, determined that a school district had to pay for oneon-one nursing care for Garrett F, who required tracheotomy suction, repositioning, assistance with feeding, ventilator setting checks, assessment of respiratory status, catheterization, and assessment for autonomic hyperreflexia (Katsiyannis & Yell, 2000). Section 504 of the Rehabilitation Act, the civil rights law protecting individuals with disabilities from discrimination by recipients of federal financial assistance, is less demanding on schools. This law requires that schools provide the accommodations needed to allow the child to participate in an educational program comparable to that to which they would otherwise be entitled unless the accommodations would result in a “fundamental alteration of the nature of the program” or impose an “undue financial burden” on the school system (Thomas & Hawke, 1999). Decisions about which services schools should provide often hinges on the distinction between medical and health-related services, a distinction that becomes less clear with increasingly complex needs. Medical services are considered related services only if a licensed physician provides them for diagnosis and evaluation to determine the child’s needs for special education and related services. Schools are not
JOURNAL OF PEDIATRIC HEALTH CARE
Smucker
expected to provide physician services unless they involve diagnosis or evaluation. Schools are required to provide “health related services” if a service can be provided by a school nurse or a layperson, such as a teacher, with minimal training (Smith-Davis & Littlejohn, 1991). As children with increasingly complex medical conditions participate in public schools, the decision regarding who will pay for such services as oneto-one nursing care for a child who is ventilator-dependent becomes equally complex. The 1988 amendments to the Social Security Act authorize Medicaid reimbursement for Medicaid-covered related services in the IEPs of Medicaid-eligible students with disabilities.
A
s Medicaid contracts
with managed care for services, parents increasingly find themselves caught between school systems and managed care plans regarding which entity is responsible to provide care while a child is in school.
Treatments recommended through the Early and Periodic Screening, Diagnosis and Treatment process are likewise covered through Medicaid. As Medicaid contracts with managed care for services, parents increasingly find themselves caught between school systems and managed care plans regarding which entity is responsible to provide care while a child is in school. School systems may also seek thirdparty payment for services from families’ private insurance. However, schools may not compel parents of chil-
dren with disabilities to file insurance claims that would create the threat of financial loss for the parents (SmithDavis & Littlejohn, 1997). Financial loss would come from spending down lifetime limits on coverage, increases in premiums, and the need to pay for deductibles.
GATEKEEPER ROLE Because of the PCP’s responsibility to make referrals to specialists, the PCP is placed in the role of gatekeeper, the one responsible for ensuring that all enrolled members get “the right service at the right time in the right place” (Conger, 1999, p. 53). Because the goal of managed care is to provide health care to a defined population within a predetermined budget, the provider faces the challenges of determining the “medical necessity” of the care, balancing the needs of individuals with the needs of broader populations, and developing and coordinating a creative but cost-conscious plan of care. The term “medical necessity” refers to the legal authority of a managed care plan or other purchaser of health care to determine whether a specific service should be covered (Ireys, Wehr, & Cooke, 1999). Services are generally considered to be medically necessary if evidence exists that they will significantly improve the person’s health, although pediatric literature proving effectiveness of many services is limited or nonexistent. Because the population of children with certain disorders is relatively small, only a few specialists may know outcomes of new treatments (Fox & McManus, 1998; Ireys, et al., 1999). Furthermore, many CSHCN need health or medical services that will maintain their day-to-day function without necessarily improving their health status. Although Medicaid Early and Periodic Screening, Diagnosis and Treatment services include those necessary “to prevent, diagnose, correct, or ameliorate a physical or mental illness or condition” (Fox & McManus, 1998, p. 109), services that are necessary to prevent the deterioration of a condition and to promote the development or maintenance of ageappropriate functioning may not be considered medically necessary. In addition to determining whether a service is medically necessary, it is also necessary to know whether a particular service is covered by the plan
January/February 2001
7
PH ORIGINAL ARTICLE C and under what circumstances it is covered. The length of the particular service may depend on whether a goal is met or it may depend on reaching a dollar amount spent on the service. For example, the plan may limit the number of physical therapy visits or it may limit physical therapy to that which brings about a measurable improvement in the child’s condition. When a family is notified of limitation or denial of services, the managed care plan should include information advising the family on the procedure to appeal the ruling. A number of families have found that a particular service is approved after several appeals. To assist the family in the appeal, the provider should review the policy for its definition of “medical necessity.” Appeals should use policy language to support the medical necessity of the requested service. Managed care has transferred to providers the ethical dilemma of meeting their responsibility to individual patients while simultaneously considering the needs of a larger population of children and the resources available to meet them (Finkelstein, 1998; Ireys et al., 1999). Savage (1999) discussed the two basic ethical principles that must be considered. The principle of autonomy would dictate supporting the parents’ choice of what they see as best for their child. The principle of justice involves stewardship of limited resources, providing the greatest good for the greatest number of people. Whereas stewardship of resources must be considered, the provider-patient relationship dictates that the provider serves as patient advocate in obtaining the most appropriate services. Serving as an advocate requires creativity and collaborative relationships with others who provide services for CSHCN. Feinberg and Beyer (1999) proposed a sequential paradigm for planning services that makes central the individual needs of the child without ignoring the issue of distribution of services. This paradigm starts with the issues of concern rather than the services that might be delivered. Family priorities provide direction as a plan is tailored to the priority goals. The only services or disciplines involved are those that have direct bearing on the identified problems. Such an approach requires that the provider work with
8
Volume 15 Number 1
Smucker
the family at setting goals and determining the most appropriate and realistic means of achieving these goals. Negotiating with payers for services requires that information be given in terms of cost-effectiveness. Communications requesting services should include documentation of symptomatology, working diagnosis, recommendations, treatment goals, and a plan for re-evaluation (Savage, 1999). An understanding of services provided and conditions for these services allow the provider to word requests in such a way that they are most likely to receive consideration. PCPs should also negotiate for the inclusion of appropriate
S
ervices are generally
considered to be medically necessary if evidence exists that they will significantly improve the person’s health, although pediatric literature proving effectiveness of many services is limited or nonexistent.
pediatric specialists within the network of providers. Some services needed to meet the identified goals may be available within the local community. Two benefits are obtained by using community services. First, these services will not deplete any limits set by the health plan. Use of community services also helps to provide the services within an inclusive environment, rather than separating the CSHCN from other children within the community. Nutrition education may be provided through the state extension service, where needs of the entire family may be
addressed. Aqua therapy may be obtained at a local community center where the child also benefits from interactions with typical children.
NURSE PRACTITIONERS AND THE MEDICAL HOME FOR CSHCN Pediatric nurse practitioners (PNPs) have a role in providing primary care and case management to children with special health care needs in a variety of settings. The U Special Kids Program (Kelly, 1999) helps to keep medically fragile children at home and helps their families maintain control of their care. Center-based PNPs play a central role in collaborating with parents and community-base providers to reduce hospital days and increase illness management. Through the REACH program (Martinez, Schreiber, & Hartman, 1991), PNPs provide care to chronically ill children at home, including case management, management of chronic illness, management of minor pediatric illness, and management of well child care. The number of emergency department visits decreased and compliance with medical regimens increased with in-home primary care. PNPs, with backgrounds in clinical research, play a significant role in ensuring that CSHCN receive the most appropriate care through managed care plans (Richman, 1999). The PNP provides proactive case management of children who are high utilizers of the health care system, using more frequent contact to ensure that the children receive the correct care in the appropriate setting. PNPs develop comprehensive educational programs and engage families as active partners in the home management of the condition. PNPs help gather data that support evidence-based management of the unique conditions in this special population. In addition to clinical outcomes, evaluation of effectiveness should include functional outcomes for the child and caregivers, patient and parent satisfaction, and cost and utilization outcomes such as number of admissions, length of stay, or number of emergency department visits.
CONCLUSION As managed care continues to evolve, it is imperative that the needs of CSHCN be considered. CSHCN can benefit from
JOURNAL OF PEDIATRIC HEALTH CARE
PH ORIGINAL ARTICLE C the coordination and management of care offered by managed care. However, there is also great risk that their unique needs will not be adequately addressed. Parents and providers must be actively involved in defining services and evaluating the outcomes.
REFERENCES Alliance for Health Reform. (1997). Managed care & vulnerable Americans: Children with special healthy care needs. Washington, DC: Alliance for Health Reform. American Academy of Pediatrics. (1992). The medical home. Pediatrics, 90, 774. American Academy of Pediatrics. (1997). Managed care and children with special health care needs. Elk Grove Village, IL: Author. Bachman, S., & Burwell, B. (1997). Medicaid carveouts: Policy and programmatic considerations. Princeton, NJ: Center for Health Care Strategies, Inc. Conger, M. M. (1999). Managed care: Practice strategies for nursing. Thousand Oaks, CA: Sage. Feinberg, E., & Beyer, J. (1999). Blending perspectives: Mediating differences in frequency/intensity recommendations. Paper presented at the 1999 Statewide Early Intervention Conference, Hershey, PA. Finkelstein, J. A. (1998). Commentary: A physician’s perspective. The Future of Children, 8, 138-140. Fox, H. B., & McManus, M. A. (1998). Improving state medicaid contracts and plan practices for children with special needs. The Future of Children, 8, 105-118. Hughes, D. C., & Luft, H. S. (1998). Managed care and children: An overview. The Future of Children, 8, 25–38. Ireys, H. T., Grason, H. A., & Guyer, B. (1996). Assuring quality of care for children with spe-
Smucker
cial needs in managed care organizations: Role for pediatricians. Pediatrics, 98, 178-185. Ireys, H. T., Wehr, E., & Cooke, R. E. (1999). Assuring high quality of care for persons with developmental disabilities and other special health care needs: Specifications for a definition of medical necessity. Washington, DC: National Policy Center for Children with Special Health Care Needs. Jackson, P. L., & Vessey, J. A. (1996). Primary care of the child with a chronic condition. St. Louis, MO: Mosby. Karp, N. (1996). Individualized wrap-around services for children with emotional, behavior, and mental disorders. In G. H. S. Singer, L. E. Powers, & A. L. Olson (Eds.), Redefining family support: Innovations in public-private partnerships (pp. 291-310). Baltimore, MD: Brookes. Katsiyannis, A., & Yell, M. L. (2000). The Supreme Court and School Health Services: Cedar Rapids v. Garret F. Exceptional Child, 66, 317-326. Kelly, A. (1999). U Special Kids: A win, win, win situation. In The second 5 years (pp. 10-12). Minneapolis, MN: Institute for Health & Disability, University of Minnesota. Kohrt, A. (1999). Problems & barriers, benefits & solutions: The medical home, working with managed care for children with special health care needs. Paper presented at the 1999 Tri-Regional Workshop, Children with Special Health Care Needs in Managed Care: Strengthening Partnerships to Assure Quality Services, Baltimore, MD. Mallory, B. L. (1996). Early intervention and family support. In G. H. S. Singer, L. E. Powers, & A. L. Olson (Eds.), Redefining family support: Innovations in public-private partnerships (pp. 151179). Baltimore, MD: Brookes. Martinez, N. H., Schreiber, M. L., & Hartman, E. H. (1991). Pediatric nurse practitioners: Primary care providers and case managers for chronically ill children at home. Journal of Pediatric Health Care, 5, 291-297.
New England SERVE. (1992). Paying the bills: Tips for families on financing health care for children with special needs. Boston: New England SERVE. New England SERVE. (1997). Assessing the quality of managed care for children with special health care needs: Summary of a regional survey of families, primary care providers & managed care organizations in New England. Boston: New England SERVE. National Information Center for Children and Youth with Disabilities. (1996). Paying the medical bills (NICHCY briefing paper). Washington, DC: National Information Center for Children and Youth with Disabilities. Poyadue, F. S. (1994). Collaboration defined mathematically. In R. B. Darling & M. I. Peters (Eds.), Families, physicians, and children with special health needs: Collaborative medical education models (pp. 17-27). Westport, CT: Auburn House. Richman, M. J. (1999). Disease management: What does it mean for nurse practitioners? Journal of Pediatric Health Care. 13, 201-203. Savage, T. (1999). Ethics, the outpatient pediatric nurse and managed care. Pediatric Nursing, 25, 197-199. Smith-Davis, J., & Littlejohn, W. R. (1991). Related services for school-aged children with disabilities. NICHCY News Digest, 1, 1-24. Szilagyi, P. G. (1998). Managed care for children: Effect on access to care and utilization of health services. The Future of Children, 8, 39-59. Thomas, S. B., & Hawke, C. (1999). Health-care services for children with disabilities: Emerging standards and implications. The Journal of Special Education, 32, 226-237. Tomko, C. F. (1996). Vision building. Quakertown, PA: Kids Together, Inc. US Department of Health and Human Services. (1998). Healthy People 2010 Objectives: Draft for Public Comment. Washington, DC: Office of Public Health and Science.
CALL FOR MANUSCRIPTS The Journal of Pediatric Health Care welcomes manuscripts related to pediatric clinical practice (ambulatory care, primary care, home health care, school health, inpatient care), health care policy, or role issues relevant to the pediatric nurse practicing in an expanded role. Please submit manuscripts to the Editor at the following address: Bobbie Crew Nelms, PhD, RN, CPNP 3133 Barbara St San Pedro, CA 90731 For details about the Journal’s editorial policy and manuscript preparation, see the Information for Authors pages.
JOURNAL OF PEDIATRIC HEALTH CARE
January/February 2001
9