KEY POINTS

Understanding a brief history of cleft care advocacy will help guide future advocacy goals.

Individuals with clefts require advocacy at the government level, in schools, and where they are treated for their condition.

Key legislation has benefited children with cleft conditions and their families.

Resources are available for affected individuals to treat the whole person and provide com-prehensive care across the lifespan.

Practitioners should be familiar with the ACPA Parameters of Care and the ACPA Team Stan-dards.

The dictionary defines advocate as “one who supports or promotes the interests of another” and de-fines lobbyist as “one who influences or sways someone toward a desired action.”1 The manner in which a person supports and promotes the interest of another often determines whether the person is lobbying or advocating for a specific cause or condition. The ability to lobby is often determined by the articles of incorporation of the institution or organization that is being represented. The articles of incorporation of most nonprofit organizations are written in such a way that lobbying is not permitted, but advocacy in the form of public education is often within the scope of the bylaws. An excellent example of this is found in the bylaws of the American Cleft Palate-Craniofacial Association, wherein it is clearly stated that “the as-sociation shall not participate or intervene in any political campaign on behalf of any candidate for pub-lic office.”2 Therefore, using the powers of the association to influence the election of a specific candidate would violate the bylaws of the organization, as would donating money in the name of the association to the campaigns of specific legislators who might support a specific health care bill.2 The Cleft Palate Foun-dation has a similar clause related to lobbying, but clearly states in the preamble to their bylaws that it is acceptable to facilitate and encourage the care of affected individuals. Therefore testifying to the legislature for continued support for the funding of cleft and craniofacial programs, with the assertion that the provi-

Part IFundamentals

Advocacy and Cleft Care

3-1

3Advocacy and Cleft Care

Marilyn A. Cohen

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Copyrighted Understanding a brief history of cleft care advocacy will help guide future advocacy goals.

Copyrighted Understanding a brief history of cleft care advocacy will help guide future advocacy goals.

Individuals with clefts require advocacy at the government level, in schools, and where they

Copyrighted Individuals with clefts require advocacy at the government level, in schools, and where they Material

Understanding a brief history of cleft care advocacy will help guide future advocacy goals.Material

Understanding a brief history of cleft care advocacy will help guide future advocacy goals.

Individuals with clefts require advocacy at the government level, in schools, and where they Material

Individuals with clefts require advocacy at the government level, in schools, and where they are treated for their condition.

Material

are treated for their condition.

Key legislation has benefited children with cleft conditions and their families.

Material Key legislation has benefited children with cleft conditions and their families.

Resources are available for affected individuals to treat the whole person and provide com

Material Resources are available for affected individuals to treat the whole person and provide com

- ACPA Parameters of Care- ACPA Parameters of CareTaylor

Taylor

Taylor

ACPA Parameters of CareTaylor

ACPA Parameters of Care

& Francis

as “one who supports or promotes the interests of another” and deFrancis

as “one who supports or promotes the interests of another” and de The manner in which

Francis The manner in which

Francisa person supports and promotes the interest of another often determines whether the person is lobbying

Francisa person supports and promotes the interest of another often determines whether the person is lobbying or advocating for a specific cause or condition. The ability to lobby is often determined by the articles of

Francisor advocating for a specific cause or condition. The ability to lobby is often determined by the articles of incorporation of the institution or organization that is being represented. The articles of incorporation of

Francisincorporation of the institution or organization that is being represented. The articles of incorporation of most nonprofit organizations are written in such a way that lobbying is not permitted, but advocacy in the

Francismost nonprofit organizations are written in such a way that lobbying is not permitted, but advocacy in the

sion of such care would enable affected individuals to enjoy a higher quality of life, for example, would be an acceptable form of advocacy and would not be considered lobbying.3

Advocacy related to the care of individuals affected by clefts and craniofacial conditions can be multifac-eted, because it may relate directly to patient care, as exemplified by the education of a school system on the need to continue speech services throughout the high school years, or it can be in the form of third party–payer education concerning the medical necessity of a surgical procedure that might otherwise be deemed cosmetic in nature. In addition to the external advocacy often required for direct patient care, institution-based cleft and craniofacial teams are often placed in the position of defending their existence because of reimbursement challenges related to team evaluations. The education provided at the institu-tional level by the directors of cleft and craniofacial programs in defense of the benefits of interdisciplinary team care is a form of institutional advocacy.

Advocacy in the health care environment has become integral to the care of patients with special health care needs, because without the education provided by the consumers of services and the organizations that represent those who provide care, the successful passage of specific health care legislation and regu-lations would be unlikely. Legislation relative to insuring patients for preexisting conditions, for example, exemplifies the role that advocacy has played in the passage of laws that may benefit individuals with a cleft. The public and professional education provided by both consumers and providers of cleft and cranio-facial care have helped to shape the provision of care in the United States since the 1930s; for example, the passage of the Federal Maternal Child and Health Act and the extension of Social Security for individuals with handicapping conditions have enabled most children in the United States to have access to basic cleft care, regardless of their family’s ability to pay.

HISTORY OF MATERNAL-CHILD HEALTH SERVICES IN THE UNITED STATESThe crash of the stock market in 1929 resulted in a major decline in income and the ability of many fami-lies to provide basic nutrition and medical care for their children, especially those affected by infantile paralysis and other crippling conditions. Legislation passed in the 1930s to assist dependent women and children, enable families to obtain basic nutrition such as milk and cheese, establish prenatal clinics, and ease the burden on families caring for children with polio. Known in many states at the time as the Crip-pled Children’s Act, it formed the basis of today’s Federal Title V Maternal and Child Health Program, one of the subsidies available today for children with special health care needs. The Maternal and Child Health Program was modified in the 1980s into a block grant that has become a match of both federal and state monies.4 However, the allocation method for this money for the care of children with clefts and other craniofacial conditions is determined by the departments of health in each of the states. Title V money is known as last-dollar funding and can only be accessed after all other third-party funding resources, includ-ing Medicaid, are exhausted. The allocation of these monies in the form of direct patient care is entirely state dependent, especially with respect to the care of those with clefts and other craniofacial conditions. Although the federal government sets the parameters that make this money last-dollar spending and tar-gets specific initiatives that must be addressed in the states’ funding plans for this money, the allocation of the funding to address these initiatives is state dependent. Access to Title V money by an individual state requires the state to submit a comprehensive spending plan to the federal government every 5 years, with annual updates addressing the federal initiatives. Because the state must reapply every 5 years, vigilance on the part of the consumer and the providers of health care is needed.

Most states review the health priorities addressed by the Maternal and Child Health Block Grant at an annual public hearing. At the time of these reviews, public comment is sought regarding the initiatives addressed and those initiatives that might be lacking. Consumers and providers of the services outlined in these plans are encouraged to give both oral and written testimony. Interestingly, a lack of advocacy in

3-2 Part I Fundamentals

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because of reimbursement challenges related to team evaluations. The education provided at the instituCopyrighted

because of reimbursement challenges related to team evaluations. The education provided at the institutional level by the directors of cleft and craniofacial programs in defense of the benefits of interdisciplinary Copyrighted

tional level by the directors of cleft and craniofacial programs in defense of the benefits of interdisciplinary team care is a form of institutional advocacy.

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team care is a form of institutional advocacy.

Advocacy in the health care environment has become integral to the care of patients with special health

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Advocacy in the health care environment has become integral to the care of patients with special health care needs, because without the education provided by the consumers of services and the organizations

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care needs, because without the education provided by the consumers of services and the organizations that represent those who provide care, the successful passage of specific health care legislation and regu-

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that represent those who provide care, the successful passage of specific health care legislation and regu-lations would be unlikely. Legislation relative to insuring patients for preexisting conditions, for example,

Copyrighted lations would be unlikely. Legislation relative to insuring patients for preexisting conditions, for example, exemplifies the role that advocacy has played in the passage of laws that may benefit individuals with a

Copyrighted exemplifies the role that advocacy has played in the passage of laws that may benefit individuals with a cleft. The public and professional education provided by both consumers and providers of cleft and cranio

Copyrighted cleft. The public and professional education provided by both consumers and providers of cleft and craniofacial care have helped to shape the provision of care in the United States since the 1930s; for example, the

Copyrighted facial care have helped to shape the provision of care in the United States since the 1930s; for example, the passage of the Federal Maternal Child and Health Act and the extension of Social Security for individuals

Copyrighted passage of the Federal Maternal Child and Health Act and the extension of Social Security for individuals Material

passage of the Federal Maternal Child and Health Act and the extension of Social Security for individuals Material

passage of the Federal Maternal Child and Health Act and the extension of Social Security for individuals with handicapping conditions have enabled most children in the United States to have access to basic cleft

Material

with handicapping conditions have enabled most children in the United States to have access to basic cleft care, regardless of their family’s ability to pay.

Material

care, regardless of their family’s ability to pay.

Material HISTORY OF MATERNAL-CHILD HEALTH SERVICES IN

Material HISTORY OF MATERNAL-CHILD HEALTH SERVICES IN

- The crash of the stock market in 1929 resulted in a major decline in income and the ability of many fami- The crash of the stock market in 1929 resulted in a major decline in income and the ability of many famiTaylor

The crash of the stock market in 1929 resulted in a major decline in income and the ability of many famiTaylor

The crash of the stock market in 1929 resulted in a major decline in income and the ability of many famiTaylor

lies to provide basic nutrition and medical care for their children, especially those affected by infantile Taylor

lies to provide basic nutrition and medical care for their children, especially those affected by infantile paralysis and other crippling conditions. Legislation passed in the 1930s to assist dependent women and

Taylor paralysis and other crippling conditions. Legislation passed in the 1930s to assist dependent women and children, enable families to obtain basic nutrition such as milk and cheese, establish prenatal clinics, and

Taylor children, enable families to obtain basic nutrition such as milk and cheese, establish prenatal clinics, and ease the burden on families caring for children with polio. Known in many states at the time as the Crip

Taylor ease the burden on families caring for children with polio. Known in many states at the time as the Crippled Children’s Act, it formed the basis of today’s Federal Title V Maternal and Child Health Program,

Taylor pled Children’s Act, it formed the basis of today’s Federal Title V Maternal and Child Health Program, one of the subsidies available today for children with special health care needs. The Maternal and Child

Taylor one of the subsidies available today for children with special health care needs. The Maternal and Child & pled Children’s Act, it formed the basis of today’s Federal Title V Maternal and Child Health Program, & pled Children’s Act, it formed the basis of today’s Federal Title V Maternal and Child Health Program, one of the subsidies available today for children with special health care needs. The Maternal and Child & one of the subsidies available today for children with special health care needs. The Maternal and Child Health Program was modified in the 1980s into a block grant that has become a match of both federal and

& Health Program was modified in the 1980s into a block grant that has become a match of both federal and Francis

Health Program was modified in the 1980s into a block grant that has become a match of both federal and Francis

Health Program was modified in the 1980s into a block grant that has become a match of both federal and However, the allocation method for this money for the care of children with clefts and other

Francis

However, the allocation method for this money for the care of children with clefts and other Francis

craniofacial conditions is determined by the departments of health in each of the states. Title V money is

Franciscraniofacial conditions is determined by the departments of health in each of the states. Title V money is

and can only be accessed after all other third-party funding resources, includ

Francisand can only be accessed after all other third-party funding resources, includ

ing Medicaid, are exhausted. The allocation of these monies in the form of direct patient care is entirely

Francising Medicaid, are exhausted. The allocation of these monies in the form of direct patient care is entirely state dependent, especially with respect to the care of those with clefts and other craniofacial conditions.

Francisstate dependent, especially with respect to the care of those with clefts and other craniofacial conditions. Although the federal government sets the parameters that make this money last-dollar spending and tar

FrancisAlthough the federal government sets the parameters that make this money last-dollar spending and tar

certain states has resulted in language specific to clefts and craniofacial conditions being removed from the health plan and replaced with more generic language such as “children with special health care needs.” The removal of specific language can potentially place one childhood health problem in competition with another for funding.

The state of Pennsylvania was once a model for the provision and funding of services related to cleft care because of the dedication and persistence of Dr. Robert Ivy and Dr. Herbert Cooper in the 1950s. Drs. Ivy and Cooper spent a good deal of time educating Pennsylvania legislators about the comprehensive care needed for children with clefts and craniofacial conditions and the need to understand that without appro-priate interdisciplinary care, an orofacial cleft could be a handicapping condition. The education provided to the legislature by these individuals resulted in coverage for care and a dedicated oversight program for that care under maternal and child health services. The cleft program in Pennsylvania continued for de-cades, and its viability was taken for granted; however, lack of vigilance by providers and recipients of this care in the late 1990s and early 2000s resulted in the loss of specific language and funding related to cleft and craniofacial care.5

Both providers and consumers of services for children with special health care needs can take an active role educating legislators and public health officials on the needs of individuals with clefts and craniofa-cial conditions by submitting testimony when maternal child health plans are reviewed at the state level. The public hearing dates for these plans can be found on the Department of Health website for each state. Plans are generally reviewed in the spring of the year, and public comment is welcome.

SUPPLEMENTAL SOCIAL SECURITY INCOMEIndividuals with certain types of disability may be eligible for supplemental income through Social Security and state Medicaid. The ability of those affected by clefts or craniofacial conditions to receive any of these funds depends on an application process rating the disability and family income. Families with members who have a craniofacial condition, especially those with conditions requiring a great deal of medical and custodial intervention, should apply for the supplemental income. Applications can be made through a local Social Security office.6

INSURANCE LEGISLATION AND HEALTH CAREDespite federal legislation concerning health insurance and the requirements for basic coverage, many com-mercial group insurance plans are generally regulated by the state rather than by the federal government. The regulation of commercial group insurance plans is entirely state dependent; therefore it is impossible to generalize what is and is not covered relative to cleft and craniofacial care. Many states, for example, have legislation relating to the need to cover all aspects of cleft and craniofacial care, including dental care and, in some instances, hearing aids and augmentative communication appliances. In most instances, however, regulations only apply to group insurance plans written by commercial insurers. The insurance commis-sioner in each state usually has jurisdiction over such plans and can mandate, after review of an insurance denial, that the commercial insurer cover a procedure.

Unfortunately, however, many insurance providers and other third-party payers fall outside of the juris-diction of the insurance commissioner and state-specific legislation because the insurance plan is either a self-insured plan or a managed care plan. Many businesses self-insure their employees, and many trade unions underwrite insurance through their health and welfare plans. Self-insurance plans are not regulated by state legislation but are federally regulated. Businesses that self-insure their employees must provide plans that have minimum benefits under the Employee Retirement Income Security Act of 1974 and the Af-fordable Health Care Act. Union health and welfare insurance plans are governed by the Department of

Chapter 3 Advocacy and Cleft Care 3-3

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priate interdisciplinary care, an orofacial cleft could be a handicapping condition. The education provided Copyrighted

priate interdisciplinary care, an orofacial cleft could be a handicapping condition. The education provided to the legislature by these individuals resulted in coverage for care and a dedicated oversight program for Copyrighted

to the legislature by these individuals resulted in coverage for care and a dedicated oversight program for that care under maternal and child health services. The cleft program in Pennsylvania continued for de

Copyrighted

that care under maternal and child health services. The cleft program in Pennsylvania continued for decades, and its viability was taken for granted; however, lack of vigilance by providers and recipients of this

Copyrighted

cades, and its viability was taken for granted; however, lack of vigilance by providers and recipients of this care in the late 1990s and early 2000s resulted in the loss of specific language and funding related to cleft

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care in the late 1990s and early 2000s resulted in the loss of specific language and funding related to cleft and craniofacial care.

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and craniofacial care.5

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5

Both providers and consumers of services for children with special health care needs can take an active

Copyrighted Both providers and consumers of services for children with special health care needs can take an active role educating legislators and public health officials on the needs of individuals with clefts and craniofa

Copyrighted role educating legislators and public health officials on the needs of individuals with clefts and craniofacial conditions by submitting testimony when maternal child health plans are reviewed at the state level.

Copyrighted cial conditions by submitting testimony when maternal child health plans are reviewed at the state level. The public hearing dates for these plans can be found on the Department of Health website for each state.

Copyrighted The public hearing dates for these plans can be found on the Department of Health website for each state. Plans are generally reviewed in the spring of the year, and public comment is welcome.

Copyrighted Plans are generally reviewed in the spring of the year, and public comment is welcome.Material

Material

Plans are generally reviewed in the spring of the year, and public comment is welcome.Material

Plans are generally reviewed in the spring of the year, and public comment is welcome.

SUPPLEMENTAL SOCIAL SECURITY INCOME

Material SUPPLEMENTAL SOCIAL SECURITY INCOMEIndividuals with certain types of disability may be eligible for supplemental income through Social Security

Material Individuals with certain types of disability may be eligible for supplemental income through Social Security

Material and state Medicaid. The ability of those affected by clefts or craniofacial conditions to receive any of these

Material and state Medicaid. The ability of those affected by clefts or craniofacial conditions to receive any of these funds depends on an application process rating the disability and family income. Families with members

Material funds depends on an application process rating the disability and family income. Families with members - funds depends on an application process rating the disability and family income. Families with members - funds depends on an application process rating the disability and family income. Families with members who have a craniofacial condition, especially those with conditions requiring a great deal of medical and

- who have a craniofacial condition, especially those with conditions requiring a great deal of medical and Taylor

Taylor

funds depends on an application process rating the disability and family income. Families with members Taylor

funds depends on an application process rating the disability and family income. Families with members who have a craniofacial condition, especially those with conditions requiring a great deal of medical and Taylor

who have a craniofacial condition, especially those with conditions requiring a great deal of medical and custodial intervention, should apply for the supplemental income. Applications can be made through a

Taylor

custodial intervention, should apply for the supplemental income. Applications can be made through a

INSURANCE LEGISLATION AND HEALTH CARE

Taylor INSURANCE LEGISLATION AND HEALTH CARE& & INSURANCE LEGISLATION AND HEALTH CARE& INSURANCE LEGISLATION AND HEALTH CAREDespite federal legislation concerning health insurance and the requirements for basic coverage, many com

& Despite federal legislation concerning health insurance and the requirements for basic coverage, many comFrancis

Despite federal legislation concerning health insurance and the requirements for basic coverage, many comFrancis

Despite federal legislation concerning health insurance and the requirements for basic coverage, many commercial group insurance plans are generally regulated by the state rather than by the federal government.

Francis

mercial group insurance plans are generally regulated by the state rather than by the federal government. The regulation of commercial group insurance plans is entirely state dependent; therefore it is impossible

FrancisThe regulation of commercial group insurance plans is entirely state dependent; therefore it is impossible

Francisto generalize what is and is not covered relative to cleft and craniofacial care. Many states, for example, have

Francisto generalize what is and is not covered relative to cleft and craniofacial care. Many states, for example, have legislation relating to the need to cover all aspects of cleft and craniofacial care, including dental care and,

Francislegislation relating to the need to cover all aspects of cleft and craniofacial care, including dental care and, in some instances, hearing aids and augmentative communication appliances. In most instances, however,

Francisin some instances, hearing aids and augmentative communication appliances. In most instances, however, regulations only apply to group insurance plans written by commercial insurers. The insurance commis-

Francisregulations only apply to group insurance plans written by commercial insurers. The insurance commis-

Labor, and the review of an insurance denial relative to these plans has multiple layers.7 When appeals are required for either a self-insurance plan or a union-based plan, the starting point after the required appeal process by the insurer is the human resource or personnel department at the employee’s place of employ-ment. The regulation and appeal process within a given state is quite variable. For example, regulation in New Jersey is provided by the Department of Health, and regulation in other states may be under the di-vision of Banking and Insurance. The best informational resource for all insurance issues is the office of the state’s insurance commissioner. This department should be able to direct individuals to appropriate regulatory resources for information on appeals.

SPECIAL HEALTH NEEDS AND PUBLIC EDUCATIONAlthough individuals with clefts or craniofacial conditions may never require a specialized educational environment, many require special education or school-based therapeutic services. The 1970s federal law governing the education for all children with handicapping conditions widened the scope of services pro-vided by a school district. Known as Public Law 94-142 initially and later renamed the Individuals With Disabilities Education Act (IDEA), it mandated that all states make available to children with disabilities a free and appropriate education in the least restrictive environment. This law established procedures by which children with disabilities should be evaluated and classified to provide them with appropriate in-dividualized educational plans (IEPs). The law ensured that the IEP would be jointly developed by the parents and school officials.

Because all states are federally mandated to provide specialized education, the process of obtaining special education is similar in all states in respect to due process of the law. In addition to education starting at the first grade level, most states have early intervention programs for children from birth to 3 years of age who have developmental delays. Obtaining information about programs for children younger than 3 years is best done by contacting a state’s Division of Mental Health and Mental Retardation. Parents of children between the ages of 3 and 6 years who need special educational services can usually obtain information through the local school district. The school district can then refer families to the appropriate resource for continued educational testing and support.

Additional programs within local school districts—known as 504 plans—are available for the monitoring of a child’s special needs when an IEP is not needed but occasional monitoring of progress is. An example of a 504 plan is the monitoring of a developmental speech issue that currently may not need therapy but may require therapy at a later date. Another example of a 504 plan would be that of special accommoda-tions for a child with attention deficit hyperactive disorder in a testing situation when a special education program is generally not necessary. Again, the need for special education or accommodation is best dis-cussed with the local school district, and the district should direct families to appropriate resources for this accommodation, such as a child study team or a school counselor. In general, therapeutic services such as speech, occupational, and physical therapy are available to children with special health care needs when that need affects their educational ability.8

The professionals and families caring for individuals with clefts and craniofacial conditions need to work together to advocate for special education and therapy in the school system. A team approach is the best approach for the habilitation process for affected individuals, but not all services can be always be pro-vided conveniently in the cleft team setting. Extending the cleft team into the educational realm is often needed to provide individuals with services in the least restrictive and most geographically appropriate environment. Professionals treating children with special health care needs must therefore be willing to both educate and advocate for the therapies needed when school-related issues arise. Advocacy resources may be available to families when educational road blocks are encountered through the offices of their lo-cal state legislators, education law centers, and university law schools.

3-4 Part I Fundamentals

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SPECIAL HEALTH NEEDS AND PUBLIC EDUCATIONCopyrighted

SPECIAL HEALTH NEEDS AND PUBLIC EDUCATIONAlthough individuals with clefts or craniofacial conditions may never require a specialized educational

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Although individuals with clefts or craniofacial conditions may never require a specialized educational environment, many require special education or school-based therapeutic services. The 1970s federal law

Copyrighted

environment, many require special education or school-based therapeutic services. The 1970s federal law governing the education for all children with handicapping conditions widened the scope of services pro

Copyrighted

governing the education for all children with handicapping conditions widened the scope of services provided by a school district. Known as

Copyrighted

vided by a school district. Known as Disabilities Education Act (IDEA

Copyrighted Disabilities Education Act (IDEAa free and appropriate education in the least restrictive environment. This law established procedures by

Copyrighted a free and appropriate education in the least restrictive environment. This law established procedures by which children with disabilities should be evaluated and classified to provide them with appropriate in

Copyrighted which children with disabilities should be evaluated and classified to provide them with appropriate individualized educational plans (IEPs). The law ensured that the IEP would be jointly developed by the

Copyrighted dividualized educational plans (IEPs). The law ensured that the IEP would be jointly developed by the Material

Because all states are federally mandated to provide specialized education, the process of obtaining special

Material

Because all states are federally mandated to provide specialized education, the process of obtaining special education is similar in all states in respect to due process of the law. In addition to education starting at

Material education is similar in all states in respect to due process of the law. In addition to education starting at the first grade level, most states have early intervention programs for children from birth to 3 years of age

Material the first grade level, most states have early intervention programs for children from birth to 3 years of age who have developmental delays. Obtaining information about programs for children younger than 3 years

Material who have developmental delays. Obtaining information about programs for children younger than 3 years is best done by contacting a state’s Division of Mental Health and Mental Retardation. Parents of children

Material is best done by contacting a state’s Division of Mental Health and Mental Retardation. Parents of children between the ages of 3 and 6 years who need special educational services can usually obtain information

Material between the ages of 3 and 6 years who need special educational services can usually obtain information - between the ages of 3 and 6 years who need special educational services can usually obtain information - between the ages of 3 and 6 years who need special educational services can usually obtain information through the local school district. The school district can then refer families to the appropriate resource for

- through the local school district. The school district can then refer families to the appropriate resource for Taylor

between the ages of 3 and 6 years who need special educational services can usually obtain information Taylor

between the ages of 3 and 6 years who need special educational services can usually obtain information Taylor

through the local school district. The school district can then refer families to the appropriate resource for Taylor

through the local school district. The school district can then refer families to the appropriate resource for

Additional programs within local school districts—known as 504 plans—are available for the monitoring

Taylor Additional programs within local school districts—known as 504 plans—are available for the monitoring of a child’s special needs when an IEP is not needed but occasional monitoring of progress is. An example

Taylor of a child’s special needs when an IEP is not needed but occasional monitoring of progress is. An example of a 504 plan is the monitoring of a developmental speech issue that currently may not need therapy but

Taylor of a 504 plan is the monitoring of a developmental speech issue that currently may not need therapy but may require therapy at a later date. Another example of a 504 plan would be that of special accommoda-

Taylor may require therapy at a later date. Another example of a 504 plan would be that of special accommoda-& of a 504 plan is the monitoring of a developmental speech issue that currently may not need therapy but & of a 504 plan is the monitoring of a developmental speech issue that currently may not need therapy but may require therapy at a later date. Another example of a 504 plan would be that of special accommoda-& may require therapy at a later date. Another example of a 504 plan would be that of special accommoda-tions for a child with attention deficit hyperactive disorder in a testing situation when a special education

& tions for a child with attention deficit hyperactive disorder in a testing situation when a special education Francis

tions for a child with attention deficit hyperactive disorder in a testing situation when a special education Francis

tions for a child with attention deficit hyperactive disorder in a testing situation when a special education program is generally not necessary. Again, the need for special education or accommodation is best dis

Francis

program is generally not necessary. Again, the need for special education or accommodation is best discussed with the local school district, and the district should direct families to appropriate resources for this

Franciscussed with the local school district, and the district should direct families to appropriate resources for this

Francisaccommodation, such as a child study team or a school counselor. In general, therapeutic services such as

Francisaccommodation, such as a child study team or a school counselor. In general, therapeutic services such as speech, occupational, and physical therapy are available to children with special health care needs when

Francisspeech, occupational, and physical therapy are available to children with special health care needs when

INTERNAL ADVOCACY FOR THE CLEFT TEAM AND ADVOCACY FOR PROFESSIONAL EDUCATIONThe interdisciplinary team approach that is advocated for the care of individuals with clefts and craniofacial conditions is often a limiting factor to adequate reimbursement for evaluation services at the institutional level, primarily because of the unique nature of the American Medical Association CPT coding system that is universally used to obtain reimbursement for medical procedures and evaluations in the United States. Because a comprehensive code for team care is not available, reimbursement to teams for their extensive evaluations is often compromised, limiting fee-for-service income to teams. The reduction of income to teams because of the inability to obtain reimbursement for comprehensive evaluations done at the same facility and on the same day can place the directors of centers in a position of needing to defend the con-tinued existence of their centers in hospitals and universities.

Although both the Parameters of Care for Cleft and Craniofacial Conditions and the Team Standards for Cleft-Craniofacial Teams endorse interdisciplinary evaluation and treatment, financial justification for continuation of cleft and craniofacial centers can be difficult. Thus the directors of these centers, who of-ten find themselves in the position of advocating for their continuation, must have documentation of the downstream revenue to other services within their institution and the impact that having or not having a center would have on the community. A recent publication has indicated that, when carefully analyzed, cleft and craniofacial centers in hospitals at the very least break even, and in most cases provide profit, to the institution through downstream revenue from the operating room, laboratory, and radiology.9

Ironically, acceptance of interdisciplinary team care as the standard of care has created some important gaps in professional education, because patients are most often treated in major centers rather than in community-based facilities. Thus community-based practitioners have limited exposure to this type of patient. Because there are limited opportunities for community-based practitioners to treat cleft and cra-niofacial patients, many graduate programs have limited the exposure of their students to the field. The responsibility of teaching young professionals about the interdisciplinary care and discipline-specific care needed by individuals with clefts and craniofacial conditions has become in large part the responsibility of the practitioners on treatment teams. The American Cleft Palate-Craniofacial Association, for example, has now developed alliances with other professional organizations, the goal of which is to help ensure that community practitioners have the knowledge to treat individuals with craniofacial conditions through continuing education experience. Advocacy by craniofacial practitioners, researchers, and professional organizations regarding the need for graduate and postgraduate education that addresses the care of in-dividuals with these conditions will help to ensure the availability of future generations of practitioners.10

WHY ADVOCACY?The ability to evaluate and treat individuals with special health care needs in an interdisciplinary fashion developed as the result of consumers and practitioners placing appropriate pressure on programs that sup-port the care of these individuals.11 Third-party payers now rarely deny payment for the repair of a cleft lip because the payer considers the procedure to be cosmetic in nature. Every time care providers men-tor a student or appeal an insurance claim, they are advocating for care. If care is to continue to advance, those working in the realm of cleft and craniofacial services, whether in the home, the laboratory, or the hospital, must remain vigilant and noncomplacent as they educate younger generations of practitioners, the general public, and their legislators.

Chapter 3 Advocacy and Cleft Care 3-5

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evaluations is often compromised, limiting fee-for-service income to teams. The reduction of income to Copyrighted

evaluations is often compromised, limiting fee-for-service income to teams. The reduction of income to teams because of the inability to obtain reimbursement for comprehensive evaluations done at the same Copyrighted

teams because of the inability to obtain reimbursement for comprehensive evaluations done at the same facility and on the same day can place the directors of centers in a position of needing to defend the con

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facility and on the same day can place the directors of centers in a position of needing to defend the continued existence of their centers in hospitals and universities.

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tinued existence of their centers in hospitals and universities.

Although both the

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Although both the Parameters of Care for Cleft

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Parameters of Care for CleftCleft-Craniofacial Teams

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Cleft-Craniofacial Teams endorse interdisciplinary evaluation and treatment, financial justification for

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endorse interdisciplinary evaluation and treatment, financial justification for continuation of cleft and craniofacial centers can be difficult. Thus the directors of these centers, who of

Copyrighted continuation of cleft and craniofacial centers can be difficult. Thus the directors of these centers, who often find themselves in the position of advocating for their continuation, must have documentation of the

Copyrighted ten find themselves in the position of advocating for their continuation, must have documentation of the downstream revenue to other services within their institution and the impact that having or not having

Copyrighted downstream revenue to other services within their institution and the impact that having or not having a center would have on the community. A recent publication has indicated that, when carefully analyzed,

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cleft and craniofacial centers in hospitals at the very least break even, and in most cases provide profit, to Material

cleft and craniofacial centers in hospitals at the very least break even, and in most cases provide profit, to the institution through downstream revenue from the operating room, laboratory, and radiology.

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the institution through downstream revenue from the operating room, laboratory, and radiology.

Ironically, acceptance of interdisciplinary team care as the standard of care has created some important

Material Ironically, acceptance of interdisciplinary team care as the standard of care has created some important

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Material gaps in professional education, because patients are most often treated in major centers rather than in community-based facilities. Thus community-based practitioners have limited exposure to this type of

Material community-based facilities. Thus community-based practitioners have limited exposure to this type of patient. Because there are limited opportunities for community-based practitioners to treat cleft and cra

Material patient. Because there are limited opportunities for community-based practitioners to treat cleft and craniofacial patients, many graduate programs have limited the exposure of their students to the field. The

Material niofacial patients, many graduate programs have limited the exposure of their students to the field. The - niofacial patients, many graduate programs have limited the exposure of their students to the field. The - niofacial patients, many graduate programs have limited the exposure of their students to the field. The responsibility of teaching young professionals about the interdisciplinary care and discipline-specific care

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niofacial patients, many graduate programs have limited the exposure of their students to the field. The Taylor

niofacial patients, many graduate programs have limited the exposure of their students to the field. The responsibility of teaching young professionals about the interdisciplinary care and discipline-specific care Taylor

responsibility of teaching young professionals about the interdisciplinary care and discipline-specific care needed by individuals with clefts and craniofacial conditions has become in large part the responsibility

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needed by individuals with clefts and craniofacial conditions has become in large part the responsibility of the practitioners on treatment teams. The American Cleft Palate-Craniofacial Association, for example,

Taylor of the practitioners on treatment teams. The American Cleft Palate-Craniofacial Association, for example, has now developed alliances with other professional organizations, the goal of which is to help ensure that

Taylor has now developed alliances with other professional organizations, the goal of which is to help ensure that

Taylor community practitioners have the knowledge to treat individuals with craniofacial conditions through

Taylor community practitioners have the knowledge to treat individuals with craniofacial conditions through continuing education experience. Advocacy by craniofacial practitioners, researchers, and professional

Taylor continuing education experience. Advocacy by craniofacial practitioners, researchers, and professional organizations regarding the need for graduate and postgraduate education that addresses the care of in

Taylor organizations regarding the need for graduate and postgraduate education that addresses the care of in& continuing education experience. Advocacy by craniofacial practitioners, researchers, and professional & continuing education experience. Advocacy by craniofacial practitioners, researchers, and professional organizations regarding the need for graduate and postgraduate education that addresses the care of in& organizations regarding the need for graduate and postgraduate education that addresses the care of individuals with these conditions will help to ensure the availability of future generations of practitioners.

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dividuals with these conditions will help to ensure the availability of future generations of practitioners.FrancisThe ability to evaluate and treat individuals with special health care needs in an interdisciplinary fashion

FrancisThe ability to evaluate and treat individuals with special health care needs in an interdisciplinary fashion developed as the result of consumers and practitioners placing appropriate pressure on programs that sup

Francisdeveloped as the result of consumers and practitioners placing appropriate pressure on programs that sup

CONCLUSIONHealth care advocacy is multifaceted and the role of the providers of cleft and craniofacial care in this process is as diverse as the care itself. To ensure the availability of appropriate care, as recommended by the ACPA Parameters of Care11and the ACPA Team Standards,12 providers and consumers of care must co-operatively advocate by educating the public, legislators, school systems, health care systems, third-party payers, and those writing the curriculum for related professional training programs on a continuous basis.

Ensuring that care and advances in diagnosis and treatment are available to individuals with clefts and craniofacial conditions involves major effort by those providing care and those engaging in related clini-cal and translational research. Every time a provider of care challenges a negative decision on the part of a third-party payer regarding a recommended treatment, that provider is advocating for the needs of affected individuals. Knowledge of every avenue that can be taken to change a negative decision regard-ing a recommended treatment or therapy further ensures that state-of-the-art care will remain available. Consumers, providers, and researchers can and should testify on legislative issues related to health care to maintain and advance the availability of interdisciplinary care. Removing some of the road blocks to care and research through the education of legislators, government officials, and institutional administrators is one of the best forms of advocacy.

Advocates of cleft and craniofacial care must have written data that includes who and what will be affected by their efforts, as well as published data that relates to a proposed program or project and to the conse-quences of not having such a program. Appeals of insurance coverage denials, for example, should include published data supporting the need for procedure, of the consequences to the patient if the procedure is not performed, and of the financial impact on the insurer if additional treatment is later required as a result of the denial for services. School issues should be addressed in a similar manner. It is important to remem-ber that staff in the offices of both local and federal legislators can be helpful with many aspects of health care advocacy, including the appeal of denials for supplemental Social Security income or school-based therapy. The administrative staff in legislative offices is usually knowledgeable about the regulations and laws dealing with health care insurance; related pending legislation; and the avenues to successfully work with Social Security, school systems, and both Medicaid and subsidized health insurance.

REFERENCES

1. Merriam-Webster’s Collegiate Dictionary, ed 11. Springfield, MA: Merriam-Webster, 2003.2. American Cleft Palate-Craniofacial Association. Bylaws: Article XIII—Activities of the Association. Available at

http://www.acpa-cpf.org/who_we_are/bylaws/.3. Cleft Palate Foundation Bylaws. Preamble. Available at www.cleftline.org.4. Lenroot KF. Child welfare 1930-40. Ann Am Acad Pol Soc Sci 212:11, 1940.5. Mazaheri M, Randall P. Personal communication, 2013.6. Social Security Disability Income. Supplemental Security Income Home Page—2014 edition. Available at www.

socialsecurity.gov/ssi.7. United States Department of Labor. Available at www.dol.gov/ebsa. 8. Romano JL. Legal Rights of Catastrophically Ill and Injured: A Family Guide, ed 2. 1996. 9. Deleyiannis F, TeBockhorst S, Castro DA. The financial impact of multidisciplinary cleft care: an analysis of hos-

pital revenue to advance program development. Plastic Reconstr Surg 131:615-622, 2013.10. American Cleft Palate-Craniofacial Association Core Curriculum. Available at www.acpa-cpf.org.11. American Cleft Palate-Craniofacial Association. The Parameters for Evaluation and Treatment of Patients with

Cleft Lip/Palate or Other Craniofacial Anomalies, Revised Ed, 2009. Available at http://www.acpa-cpf.org/up-loads/site/Parameters_Rev_2009.pdf.

12. American Cleft Palate-Craniofacial Association. Standards for Cleft Palate and Craniofacial Teams. Available at http://www.acpa-cpf.org/team_care/standards/.

3-6 Part I Fundamentals

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Ensuring that care and advances in diagnosis and treatment are available to individuals with clefts and Copyrighted

Ensuring that care and advances in diagnosis and treatment are available to individuals with clefts and craniofacial conditions involves major effort by those providing care and those engaging in related clini-Copyrighted

craniofacial conditions involves major effort by those providing care and those engaging in related clini-cal and translational research. Every time a provider of care challenges a negative decision on the part

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cal and translational research. Every time a provider of care challenges a negative decision on the part of a third-party payer regarding a recommended treatment, that provider is advocating for the needs of

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of a third-party payer regarding a recommended treatment, that provider is advocating for the needs of affected individuals. Knowledge of every avenue that can be taken to change a negative decision regard

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affected individuals. Knowledge of every avenue that can be taken to change a negative decision regarding a recommended treatment or therapy further ensures that state-of-the-art care will remain available.

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ing a recommended treatment or therapy further ensures that state-of-the-art care will remain available. Consumers, providers, and researchers can and should testify on legislative issues related to health care to

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Consumers, providers, and researchers can and should testify on legislative issues related to health care to maintain and advance the availability of interdisciplinary care. Removing some of the road blocks to care

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Copyrighted and research through the education of legislators, government officials, and institutional administrators is one of the best forms of advocacy.

Copyrighted is one of the best forms of advocacy.

Advocates of cleft and craniofacial care must have written data that includes who and what will be affected

Copyrighted Advocates of cleft and craniofacial care must have written data that includes who and what will be affected Material

Advocates of cleft and craniofacial care must have written data that includes who and what will be affected Material

Advocates of cleft and craniofacial care must have written data that includes who and what will be affected by their efforts, as well as published data that relates to a proposed program or project and to the conse

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by their efforts, as well as published data that relates to a proposed program or project and to the consequences of not having such a program. Appeals of insurance coverage denials, for example, should include

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Material performed, and of the financial impact on the insurer if additional treatment is later required as a result of

Material the denial for services. School issues should be addressed in a similar manner. It is important to remem-

Material the denial for services. School issues should be addressed in a similar manner. It is important to remem-ber that staff in the offices of both local and federal legislators can be helpful with many aspects of health

Material ber that staff in the offices of both local and federal legislators can be helpful with many aspects of health care advocacy, including the appeal of denials for supplemental Social Security income or school-based

Material care advocacy, including the appeal of denials for supplemental Social Security income or school-based - care advocacy, including the appeal of denials for supplemental Social Security income or school-based - care advocacy, including the appeal of denials for supplemental Social Security income or school-based therapy. The administrative staff in legislative offices is usually knowledgeable about the regulations and

- therapy. The administrative staff in legislative offices is usually knowledgeable about the regulations and Taylor

care advocacy, including the appeal of denials for supplemental Social Security income or school-based Taylor

care advocacy, including the appeal of denials for supplemental Social Security income or school-based therapy. The administrative staff in legislative offices is usually knowledgeable about the regulations and Taylor

therapy. The administrative staff in legislative offices is usually knowledgeable about the regulations and laws dealing with health care insurance; related pending legislation; and the avenues to successfully work

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Francismerican Cleft Palate-Craniofacial Association. Bylaws: Article XIII—Activities of the Association. Available at

ocial Security Disability Income. Supplemental Security Income Home Page—2014 edition. Available at

Francisocial Security Disability Income. Supplemental Security Income Home Page—2014 edition. Available at