The Pediatrician and Advocacy

The Pediatrician and Advocacy for Children with Special Health Care Needs Ron S. Levin MD Center for Infants and Children with Special Needs Definitions: Children with Special Health Care Needs (CSHCN) 1) A physical, mental, emotional, behavioral, or developmental disorder expected to last 12 months or longer at least 75% of the time or having sequelae that last 12 months or longer and requiring treatment and/or monitoring. 2) At risk categories- conditions that do not meet the criteria used to define chronic conditions, but usually require services of an amount and type greater than that for non-chronically ill persons and place the individual at risk for ongoing chronic conditions. Examples include prematurity, prenatal drug exposure, FTT, child abuse, and some mood and personality disorders. 1) Maternal and Child Health Bureau (Dept of Health & Human services) dfn: Children with special health care needs (CSHCN) are those with who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and who require more accurate clinical representation of the patient. 1 Medical Home The AAP defines the Medical Home as the provision of accessible, continuous, comprehensive, family-centered, coordinated and compassionate care. There should be a relationship of mutual responsibility and trust with the child and their family, and a shared responsibility with the community. All children and especially CSHCN should have a Medical Home. Advocacy 1) Dictionary… The act or process of pleading in favor of or supporting or recommending a cause or proposal. Rudolph et al… Any child health problem where the system is at fault and political action is required. Public Health, Christoffel…advocacy that is intended to reduce death or disability in groups of people and that is not confined to clinical settings. Lancet…Taking the problems that one faces day to day and pursuing their resolution outside their usual place of presentation. Levin…Anticipatory and/or crisis driven intervention on behalf of the patient or family for those issues that they are unable to resolve for themselves that result in improved quality of life. It is the responsibility of all health care providers, it may not reduce mortality, and is not limited to political action. It involves prevention, life-prolonging, and/or palliative care. 2) 3) 4) 5) 2 Why is advocacy needed? When families of CSHCN were surveyed they indicated that : The primary reasons that many families do not access available supports are because they are not aware of them and because of barriers that prevent access. Family barriers to obtaining appropriate care Lack of adequate knowledge of the resources needed &/or available and how to access them. Lack of standardization and sharing of information when applying for the many different programs. Difficulty obtaining and maintaining an accurate and complete medical record. Inadequate finances Confusing and inadequate insurance coverage Conflicts with work need schedule Inability to obtain services already approved due to a shortage of providers….i.e. skilled in-home nursing, mental health services. Inability to obtain quality services. Inability to conveniently schedule services. Lack of community services ..i.e…daycare services, respite (private & institutional), residential facilities. Lack of adequate physician interest, time, and expertise. Poor communication among physicians and other providers: i.e. on-call physicians who never heard of the child and have no access to the medical record Difficulty obtaining 2nd opinions especially out of town. Difficulty obtaining information and access to alternative care. 3 Too many physicians and therapists and inability to get someone to coordinate all of the child’s care Transportation difficulties Vocational training that is offered too late and with too few options. Loss of developmental therapies and many social activities once they leave (graduate) school. Background and history for Pediatricians being advocates Why should it be the physician? 1) The AAP was founded by a group of Pediatricians who took an advocacy position in 1922 in support of the first piece of Maternal and Child Health legislation. 2) The Medical Home concept adopted by the AAP states that the Pediatrician is charged with identifying the needs of the child and the family in the context of the child’s ongoing health care requirements and then providing a plan for achieving those goals. In this effort they have a shared responsibility with the Community 3) The AMA principles of honorable behavior (medical ethics): VII – A physician shall recognize a responsibility to participate in activities contributing to the improvement of the community and the betterment of public health. IX – A physician shall support access to medical care for all people. Following a devastating injury or debilitating illness, patients and families are often expected to make many critical decisions regarding the care and safety of themselves or a loved one with limited resources, knowledge, and finances. Physicians have the better expertise, respect, 4 access, and “clout” to effectively advocate. And, remember, physicians and their families are patients also, and thus will benefit from any resultant improvements in our health care. Goals of advocacy General… As a physician, we must educate ourselves in the areas we advocate, then we must learn how to use that knowledge to improve the quality of life for our patients and their families. Political… advocacy seeks to change upstream factors like laws, Regulations, policies, and institutional practices, prices, and product standards that influence the personal health choices of often millions of individuals and the environments in which these are made. An advocate seeks to use and maximize all of the avenues available to help patients achieve their goals. They must become skilled at presenting their cases. They should also teach and encourage (empower) the patient and caregivers to be advocates. Advocates believe it is important for parents to have expectations about what their child with disabilities can achieve in the future and to encourage their child to develop as much independence as possible. ( Exceptional Parent Sept, 2002) Does advocacy work? Efforts to attribute causal effects from advocacy processes to their outcome objectives are fraught with problems. Efforts to influence political decision making may take years or even decades and thus may 5 be difficult to document or quantify unless they are highly defined such as the efficacies of a given treatment or vaccine. Success may be evaluated by judging how advocacy changed media reportage and/or commentary. Advocacy in the daily coordination of care may be judged not only on the direct medical outcome of a given condition, but also improvement in stress of the family, reduction in hospital admissions and LOS, school performance, and/or resolving financial crises. Where is advocacy needed? Advocacy can occur in many venues. It should be part of all aspects of care and thus these venues overlap. Political arena Local community State National Media Financial issues Resolution of insurance conflicts Medicaid/SCHIP coverage Physician reimbursement Supplemental aid/programs SSI BCMH Home care waivers County Health Levy CCHMC Financial Aid ARC Family Resources 6 Utility Company Programs Estate Planning/Special Needs Trust Hospital / Office Safety counseling Immunizations Appointment reminders Developmental questionnaires Discharge Planning Treatment options 2nd opinions Care Conferences Coordinating Procedures Coordinating Outpatient services Alternative care (CAM) decisions Community School Recreation Daycare Respite Transportation Nursing home/extended care Work Psychosocial issues “Family” Stress on other family members Abuse/ neglect Palliative care / Hospice Foster care Adoption Support Groups Transitions 7 Legal Guardianship Liability DNR Estate planning Teaching Research Barriers to Advocacy These are factors that interfere with or block the community’s ability to provide a Medical Home and the family/patient’s ability to access or use the services. Tension can exist between the pursuit of preventive health goals and other social agenda (i.e. sex education) Regulations may interfere with personal liberties, i.e. Helmets for motor cycle riders or gun control It is easier to get consensus on the general concerns than it is to agree on strategies to achieve these ends. Contested definitions of what is at issue. Successful advocates cannot avoid engaging in politics and the core problem of politics has been described as being one of struggle for ascending among the multiple definitions of the same events. Communities prioritize one issue or value over another. Data collected and it’s quality may be less convincing than perceived injustice, mistrust of science and authority, lashing out at the power elite, etc. They may be outraged about a lowrisk issue and be indifferent to a high-risk issue. A highly emotional issue that can effect all of us is going to be easier to advocate successful, i.e. Mandatory fences around swimming pools to prevent accidental drowning Vs. clean needles for heroin addicts Physicians are not trained as advocates, advocacy is time-consuming and not 8 reimbursable. They find it difficult to stay current on community resources, legal, and financial issues. ____________________ Specific Issues ___________________ Gun Control Tobacco/ Smoking Auto safety Safety of food supply Drug and alcohol abuse Poison control Home safety Immunizations – Insurance coverage, family anxiety and compliance Universal Health Care SIDS and sleeping position Global Warming Access to Health Care Insurance – Physician Reimbursement The ethics of the profession demand that patients receive the services in kind and in number that are most beneficial for their health, regardless of the compensation. Professional caregivers must facilitate the delivery of quality care in a cost-effective environment that seeks positive outcomes. Medical care is provided under two main insurance modes of reimbursement in the U.S.A.: Fee for Service, where patients are charged for each service rendered; and Capitation, where the Physician is paid a lump sum for their 9 services. Each of these has pros and cons in so far as fair payment for services rendered and “incentivizing” quality health care. Physicians must be adequately reimbursed for their services in order to deliver quality care. They must continually educate themselves on the intricacies of the different types of contracts offered and aggressively advocate for what is best for patient care as well as what is fair for them. We can’t afford the proper staff or the necessary time to create a proper Medical Home if we do not generate adequate revenues. We constantly hear in the news media and from our colleagues about the inadequate reimbursement and restrictions on referrals, drugs, hospitalization, etc. but Physicians bare some of the responsibility as we are the ones negotiating and/or signing these contracts! Capitation assumes equal risk but a good physician usually attracts a larger portion of the CSHCN as their families know they will get better care. This results in unfair reimbursement. Fee for Service do not have to follow the current CPT Manual either in the Procedural codes covered or how they interpret or bundle services. For example, Medicaid and many Managed Care Contracts deny most or all of the CPT codes that cover the extra care required to provide a Medical Home for CSHCN. Managed Care Contracts limit access to care by creating their own definitions of medical necessity and standards and this not only effects patient care but increases Physician time seeking approval, filing appeals, and occasionally having to provide an alternative service. Both patients and physicians are effected by the large disparity between Medicaid and Medicare reimbursement. While Community Clinics and Hospitals often receive subsidies /or Facility Fees, community physicians do not and this further causes them to refuse or limit their Medicaid patients. 10 CPT CODING Prolonged Services (with direct patient contact) These are used when a physician provides prolonged service in an inpt or outpt setting that is beyond the usual service provided. They can be billed in addition to the E/M code. Inpatient 99354 99355 Outpatient 99356 99357 first 74 min each additional 30 min first 74 min each additional 30 min Prolonged Services (without direct patient contact) This refers to such services as reviewing records, communication with other providers or the patient &/or family. 99358 99359 first 74 min each additional 30 min Case Management Services This refers to Team Conferences needed to coordinate the activities of patient care. They may occur during a hospitalization or after discharge and the patient or family need not be present. **Each physician present can bill this code separately. 99361 99362 approximately 30 min approximately 60 min 11 There are additional codes for phone calls which involve active management of a problem over the phone, i.e. the after hours call that prevents an ER visit . They can also be used when management or coordination involves phone communication with a pharmacy, lab, social worker, home care provider, therapist, or other physician. 99371 99372 99373 brief call intermediate call complex call Modifiers The –25 modifier should be used when symptoms requiring significant amounts of physician work beyond preventive care are encountered during a preventive medicine visit (checkups) of a child with special health care needs. This would be added to the end of E/M code and billed with the preventive medicine code. Thus, a 5yo with chronic lung disease, seizures, and feeding problems comes in for his yearly WCC and the physicians spends additional time evaluating and treating his chronic problems…. The physician can then bill; 99393 99214-25 5yo preventive care visit E/M code for the additional time spent on the child’s special needs. Care Plan Oversight These codes refer to the work spent over a 30 day period to supervise the care plan for patients, i.e. development and review of care plans; review patient status reports, test results, and correspondence from other health care professionals. These codes do not signify the work done to initially set 12 up the care plan. 99374 99375 Home care 30-60 min Home care >60 min 99377 99378 Hospice care 30-60 min Hospice care >60 min 99379 99380 Nursing home 30-60 min Nursing home >60 min Insurance – Patient issues Insurance providers, both private and government, often create barriers to family’s access to care. Many insurers have policies that are vague and subject to interpretations and definitions that they alone control. Unfortunately, the Heath Care Industry and Government lack standards for such terms as medical necessity or skilled care and parity in benefits for mental health and developmental conditions. This can result in rejections and/or delays for needed services. Families of CSHCN can least afford the time or the money needed to overcome these issues. They also lack the knowledge of the condition and ability to interpret the policies that the physician has. Employers and even Benefits Personnel are often unqualified to evaluate insurance plans. They often unintentionally misinform employees about coverage and appeals. Examples incl: 1) Mental health benefits are often poorly covered as compared to physical conditions in so far as need for pre-approval, deductibles, # of visits, and/or inpatient care., 2) Rejection on the basis of medical necessity for skilled home care 13 because a parent has been shown to be capable of providing some of the care. 3) Rejection of developmental therapies on the basis of habilitation vs. rehabilitation, or rejection on the basis of maintenance of function. Physicians can help to interpret policies and are better equipped to negotiate and/or appeal rejections/denials. We not only have expertise, respect, and often better access to the “decision makers” (i.e., medical director), but also leverage in negotiating for benefits that may not be included in the policy. Care conferences can help to create consensus in proving medical necessity. Participation in Professional and Family Support organizations at the Local, State, and National levels can work to favorably effect policy changes to correct these inequities rather than having to fight each issue over and over again. School CSHCN are entitled to an Individual Education Plan (IEP) under IDEA, Individualized Family Service Plan (IFSP), and/or 504 Plan. This not only refers to a special education teacher and curriculum, but also any need for assistive technology, physical accommodations, a classroom aid, developmental therapies, vocational training, and/or skilled nursing. Should a child be mainstreamed all or part of the day or even home schooled. Mainstreaming can improve CSHCN’s self image and motivation as well as normal students acceptance and understanding of CSHCN, but may also dilute the special services needed. Some children have more complex medical conditions and might be better off if schooled at home. The school must then provide a teacher as well as developmental services as needed. Attending the IEP/IFSP, making phone calls, and/or writing letters can have a significant effect on their outcome. 14 Also, recommending that the family request an advocate from a parent support group can be helpful. Preschool CSHCN are eligible for Early Intervention (EI) or Headstart programs. Again the Physician should make sure all of the patient’s needs are met. For example: Some children with significant developmental problems are only assigned a Teacher through EI when they need professional OT/PT and Speech therapy. The physician may need to advocate for these services or refer the child to one of the outpatient centers which offer developmental therapies. Transportation may be an issue for some CSHCN. They may need to be transported in their wheelchair and/or be accompanied by a nurse. They may not tolerate long rides due to anxiety or other behavior problems. Emergency protocols may need to be developed. If skilled nursing is needed, it is important to determine whether the nurse needs to be in the same room or just nearby as some school nurses are 5 to 10+ minutes away. If the child has a tracheostomy or prone to prolonged seizures, this could result in serious injury or even death. The nurse and occasionally the teacher, aid, or principal may need to be trained in the recognition and treatment of specific acute medical emergencies. Teachers, students, and/or parents may need to be educated about a CSHCN’s specific condition to alleviate anxiety, i.e. .. Congenital CMV, Hepatitis B or C, HIV. Teenage CSHCN under IDEA should be evaluated as early as 14yrs for vocational training. These services are defined as “a coordinated set of activities for a student, designed within an outcome-oriented process, which promotes movement from school to post- school activities.” Parents of CSHCN have increased need for and difficulty finding daycare. This is often needed after school, on weekends, holidays, and during the summer. 15 Recreation The CSHCN should be allowed and encouraged to lead as normal a life as possible, but not if it puts their health and safety at risk. The AAP has a Policy Statement and guide to assist with choosing a safe activity. Special Olympics offers many opportunities and has been significant in bringing Worldwide attention to the achievements that people with disabilities can accomplish, given the proper resources and encouragement. A simple field trip can create lifethreatening problems if the caregivers disregard the medical skill and precautions followed at home and school. Transportation issues are similar to those with school. Community Resources The physician needs to be familiar with Community Resources, what they offer, how to qualify and access them, which resources are inadequate or absent. We must continually educate ourselves and our staffs, educate the caregivers, and work to correct the deficiencies. Joining, consulting to, and/or attending Parent Support Groups can be helpful to the patients and their families as well as contributing to the education and experience of the physician. The AAP guidelines for Community Pediatrics encourages a commitment to use a community’s resources in collaboration with other professionals, agencies, and parents to achieve optimal accessibility, appropriateness, and quality of services for all children, and to advocate especially for those who lack access to care because of social or economic conditions or their special health care needs. In other words… It does “take a village”. 16 Community Resources SCHIP Early Intervention Family Voices Head Start Medicaid BCMH Ohio Home Care Waivers SSI Project Search WIC Family Resources Community Mental Health Clinics CITE Interface Respite ICFMR Facilities Foster care Hospice 17 Hospitalization Admission The Physician must pre-authorize most non-emergency admissions and often negotiate length of stay (LOS) with the insurer. They should also advocate for the hospital unit and room to which the patient is admitted. For example: A tracheostomy patient should be placed on a unit where he/she can be properly monitored and where the staff are appropriately trained and respiratory therapy is close by. An autistic patient who is self-abusive and physically aggressive should either be admitted directly to the Psych Unit or with a properly trained room attendant (sitter) if a Medical bed has to be used. Discharge Planning Success or failure of home care is very dependent on the how well the discharge is set up. Anticipation and timing are the keys, waiting to the last minute is the way to fail. Discharge planning should begin shortly after admission. The physician nurse, &/or social worker must be able to assess the present and future needs, abilities, and resources of the patient and family. The1 and 2 insurance coverage needs to be verified and extent of benefits determined. Programs, such as WIC, Medicaid, BCMH (Title V), and Waiver, need to be applied for. Home care agencies need to be picked based on quality and insurance panels. The home and car specifications need to be adequate; school &/or daycare need to be prepared; local paramedics notified of the patient’s location and medical problems; utilities notified incase of power outages, etc.; out-of-pocket expenses calculated; support &/or backup people need to be identified. Caregivers need to be taught the child’s care and overnight 18 trials &/or off-site passes may help the family as well as the staff judge their readiness for discharge. Often, the insurance coverage is negotiable if the discharge team can show the case manager or Medical Director that the hospital stay will be shortened and/or readmission less likely. Medicaid and Waiver program approvals may take > 30 days and the latter may have a waiting list. Discharge should not occur if the staff does not feel that the care plan is adequate, as poor outcomes and readmission are more likely. (see Discharge Planning Form) Hospice - Palliative Care and DNR Status About 53,000 children die each year from various causes. The AAP Guidelines note that these patients and their families may benefit from palliative care designed to relieve or minimize the symptoms of the condition, including the physical, emotional, social and spiritual. Medical professionals are obligated to ensure that suffering is minimized and medical technology is used only when the benefit for the child outweighs the burden. Both the American Academy of Pediatrics and Children’s Hospice International have recently issued new guidelines for children with life-threatening or terminal conditions: There should be the implementation of a comprehensive palliative care program from the time a child is diagnosed with a life-threatening or terminal condition to complement life-prolonging care. While it is crucial that caregivers become familiar with the services available in their community, insurance and state programs need to change in order to make the healthcare system work for this population. Many programs don’t allow simultaneous coverage of life-prolonging and palliative care; limit the length of time palliative care can be offered; deny or greatly limit the reimbursement for physician involvement, i.e., the CPT codes for home care management, 19 prolonged services (i.e., team care conferences, reviewing old records), and phone calls. The goal for the child and family is improved quality of life while reducing the frequency of ER visits, hospital admissions, length of stays, and office visits. When the physician coordination of home care is not reimbursed, the physician loses money when providing this level of care. Thus physicians are not “incentivized” to actively participate in the care of these children. Family members often disagree on or misunderstand treatment options such as Hospice or DNR status. Physicians may disagree &/or offer several options on treatment. Insurance may reject or limit coverage for certain referrals or treatment options. Families, especially of those patients with irreversible or terminal conditions, often choose alternative care options in addition or instead of traditional therapies. The Primary Care Physician (PCP) plays a vital role interpreting subspecialty recommendations, providing background information, and general guidance to these families. The PCP can often better advocate for patient and family needs as their opinions are highly respected and they often can connect with the insurer’s Medical Director instead of the Nurse Case Manager or the school principal instead of the teacher. End of life (EOL) issues are often not as clear or simple as the patient/family anticipated. Many children are too young or too neurologically impaired to participate in the decision making process. Examples of EOL issues: 1) A child with severe CP, MR, having a tracheostomy and gastrostomy comes into the ER with severe pneumonia which may require ventilation. The family had previously considered DNR status. Mom now wants to know: Will the ventilator need only be for a few days or will the patient be vent dependent long term? If he has a respiratory arrest, can we give him positive pressure, but not intubate him? If she makes a decision can she change her mind at a later time? 2) A Guardian is asked to decide on the DNR status of a critically ill but 20 not terminal child as described in example 1. The guardian’s legal authority in EOL matters is usually subject to the state law and county judge who appointed them guardian. In Ohio, the law and most judges require that the physician declare that the patient has an irreversible and terminal disease. The patient described is not “terminal” and thus the physician cannot ethically place such a note in the chart. 3) A terminally ill child’s family and caregivers agree not to do any resuscitation should the child arrest. However, the event occurs and the people present call 911 out of discomfort. The paramedics arrive and resuscitate the child because they are not legally bound by the decision and are concerned about the liability. These examples clarify the importance of having all parties involved with the child’s care fully understand the issues of EOL care such as DNR status. Tremendous family anger and guilt as well as patient discomfort can be minimized by anticipating these concerns and making sure that all caregivers, family, and the patient (when possible) are properly educated and involved in the decisions. The term “terminal” is usually meant to refer to a person who is likely to die in the near future in spite of attempts to cure or prolong their life. For hospice references this is usually less than 6 weeks or 6 months. However there are circumstances where a patient &/or their family/guardian can shorten or prolong the patient’s life by decisions they make to continue or cease “life prolonging” measures. Thus, someone with a “life threatening” condition who decides to cease a treatment that is keeping them alive, i.e. a respirator, oxygen, &/or chemotherapy, may now be considered terminal. 21 Guardianship and Estate Planning Children with chronic illness are more likely to have custody issues. They may be in Foster care, or institutionalized; the parents may be divorced or unmarried; the parent(s) may be minors; family members other than the parents may be the primary caregivers; &/or one parent may have custody or it may be shared. Children become their own guardian by default when they turn 18 years or in some states, upon marriage. Every person eighteen (18) years of age or older is deemed to be competent by law, regardless of his or her ability or capacity. A guardianship or conservatorship, in general, is a legal mechanism that must be approved by a court that grants a competent adult legal power to make decisions for another person, one who is considered incapable of making decisions himself or herself. Courts differ in each State and sometimes County as to what rights a guardian has. The rights of a guardian may be limited by the Probate court to reflect the specific needs of the individual who has a disability. A guardian may be able to give consent for routine care and minor surgical procedures, but not end of life (EOL) issues such as DNR. It is vital that all physicians, caregivers, and family know and understand the guardianship status of the child. If the child is approaching 18 years, they should be aware of the need to pursue guardianship if the child’s physical &/or mental disability would render them incapable of making decisions for themselves. It may be helpful to have the child evaluated by a Neuropsychologist, Neurologist, &/or other healthcare professional. It may also be helpful to consult an attorney. Many mistakes &/or delays in care can be avoided by proper attention to this issue. A disabled patient with slight or absent cognitive deficits may voluntarily give the parent(s) or other qualified adult Power of Attorney over all or part of their life 22 decisions such as medical or financial decisions. While this is less complicated to obtain, it can also be revoked by the patient at any time. Parents’ and or guardians wills need to take into consideration who will take over their responsibilities should they die or become too incapacitated to look out for the individual with special needs. It is also important that parents and other family members take care not to place moneys in the name of the person with disabilities that might disqualify them from needed programs. A Special Needs Trust may be set up that can often shield funds necessary for improving the recipient’s quality of life. The Transition of CSHCN to Adulthood “Transition” is defined as the passage from child-centered activities to adultoriented activities. It occurs in 3 main aspects of life: 1) from pediatric health care to adult-oriented care, 2) from school to work, and 3) from home to community. People with chronic illness are the fastest growing group in today’s healthcare. More and more children with chronic illness are surviving to adulthood. There are many obstacles that make this process difficult. 1) Most children with special needs see a pediatrician and one or more pediatric subspecialists. Pediatric physicians usually see patients until they reach age 18 years. 2) Most adult physicians are not well-trained or comfortable with pediatric diseases/conditions. 3) Subspecialty clinics often see patients intermittently and are not able to provide 24hr care. There is often poor communication and coordination between subspecialists with most correspondence going just to the primary care physician. 4) Many of the supportive services needed by these children end when they finish school and are very hard to replace. Schools provide: Special education 23 OT, PT, and Speech Socializing - school is often the major source of social interaction for these children especially with non-adults. Daycare - being in school often enables the parents &/or other family members to work, run errands, and care for their other children. Transportation to and from school as well as to many activities during and after school. Nursing care if needed is provided by the school and is usually not counted in the hours allotted for home. Counselors to help with psychological and social issues. 5) Upon finishing school, most classmates without special needs move on to college, marriage, and/or multiple job opportunities. These options are less easily obtained by those with special needs, especially those with more severe conditions. 6) Mental health issues are more likely to develop in young adults with special needs and also in the other family members. Anxiety and depression are common among young adults with chronic medical illnesses. 7) Parents and other caregivers are aging and often are no longer able to lift or otherwise aid in the care of their disabled family member. Some patients may need a personal aid or no longer be able to be cared for at home. 8) Once 18 years, guardianship goes to the patient unless the family takes the needed measures to appoint a guardian. Often, neuropsych testing is needed to help determine the patients ability to be their own guardian. Geriatric centers have programs that evaluate their patients including going to their homes in order to assess their needs and ability to recognize them. 9) Insurance coverage usually ceases if they are no longer a student. Even if they find a job, it must be full time and not have insurance with a “preexisting” clause. 24 10) Some disabilities worsen with age and with the loss of support systems and the family caregivers aging, the young adult with special needs may require more assistance. Nutritional status may deteriorate &/or the person may no longer be able to walk. DNR and Hospice issues may come up. Abuse, Neglect, and Non-compliance with Care Certain professionals, identified in Section 2151.421 of the Ohio are mandated to report any child they suspect may be, or is at risk of being, abused or neglected. Those required to report this include: Attorneys Audiologists Child care workers Children’s Services workers Clergy Coroners Day care personnel Dentists Nurses * Physicians, incl residents * Podiatrists Psychologists, counselors School employees Social workers Speech therapists You should immediately report any child under 18yrs of age, or any physically or mentally handicapped child under 21yrs, who you have reason to believe has suffered any wound, injury, disability or condition of such a nature as to indicate abuse or neglect. It is important to note that you need only suspect-have reason to believe- that abuse or neglect is occurring. This includes failure to keep medical appointments, take medication, followthru with therapy sessions, obtain diagnostic tests ordered, and/or report patient status when significant. It is the responsibility of the children’s services agency, through its investigation, to determine if abuse or neglect is in fact occurring. 25 Case example # 1 TJ is a 2 yo male with Down Syndrome, developmental delay, seizures, CP, congenital heart disease, temperature instability, feeding problems/gastrostomy, hypothyroidism, sialorrhea, tracheomalacia/tracheostomy, and behavior problems. The family just moved here from West Virginia. His mom is an 18 yo single parent with a 9th grade education. The father is not involved and mom lives with her mother and grandmother. There are 4 other children in the home. They live in an apartment in the inner city on the 2 nd floor. They have one car that frequently breaks down. His insurance was West Virginia Medicaid. His subspecialists were: Genetics Cardiology ENT Neurology Endocrinology Gastroenterology General surgery Medications incl: Prilosec Topamax Lasix Robinul Synthroid Albuteral Developmental therapies: OT PT Speech DME incl: Oxygen Oximeter Feeding pump & supplies Suction equip & supplies Nebulizer Tracheostomy tubes Wheelchair 26 Case example # 2 AK is a 14 yo female with mental retardation, PDD, severe behavioral problems, seizures, and feeding problems. She is often aggressive, self-abusive, and very impulsive. She cannot be left alone as she is destructive and often runs off. She has no gastrostomy but requires a formula supplement to maintain her nutrition. She is incontinent, has limited speech. She is mainstreamed with an aid but frequently sent home because of behavior problems or seizures. The school nurse has stated that it is unsafe to give Diastat in school. Her parents are in their mid thirties. They both work, own a small home, and their combined earnings are about $55,000/year. Her insurance is private with a skilled home care benefit. Grandpa is wealthy and wants to give the family money to be used for her future needs. Her medications include: Luvox Risperdol Adderall Depakote Neurontin Diastat Subspecialists: Neurology Psychiatry Gastroenterology Developmental therapies: OT PT Speech DME supplies include: Kindercal or Pediasure Diapers Wheel chair 27 QUESTIONS Do you think that advocacy should be an important part of your role as a physician? How much of your time should be spent in advocacy? What do you think that physician advocacy refers to? Do you think that all physicians need to be involved in advocacy? Which medical subspecialties are best suited for advocacy? Why don’t physicians ask more questions about or get involved with psychosocial issues? Why do you think that many physicians aren’t involved in advocacy? Which professional caregivers should families look to as advocates? 28 How effective can you be as a physician if your patients can’t obtain the care you prescribe? How well can you deliver quality care if you aren’t adequately paid for your services? Should children receive the same level of care as adults? Are all Americans entitled to the same level of Health Care? Should middle class families with 2 working parents expect to receive less financial help with medical care as someone on Welfare? Are mental health patients entitled to equal levels of care as patients with physical conditions. What is different about pediatric patients as opposed to adult patients when it comes to advocacy? 29 Analogy If you were building a home, wouldn’t you expect the General Contractor to: Give you recommendations on a landscaper, someone to wallpaper, where to purchase lighting. Wouldn’t he/she be the best person to investigate and represent your position in conflicts with subcontractors, the architect, zoning board, building inspector, and possibly the bank. 30