Shared plans of care are records of health information communicated with the medical team and patient. This allows primary care providers, specialists and others to communicate with each other, as well as allowing access to essential medical information to families of children with special needs.
Why Does Your Child Need a Shared Care Plan? Sometimes children with special needs have multiple conditions which could be affected by each other. For example, my daughter had a kidney transplant, and when radiology wanted to do a scan with contrast for gastrointestinal bleeding, the GI doctors consulted with the renal specialists and re-calibrated the amount of dye used as it could affect kidney function. A shared care plan allows all physicians and the family to be on the same page. Shared plans of care also minimize medical errors, reduce adverse outcomes, and avoid duplicative tests and procedures. These plans allow for supported decisionmaking and shared responsibility for children's care. The U.S. Department of Health and Human Services' Maternal and Child Health Bureau is fostering increased use of shared plans of care through funding grants to states on Integrated Community Systems for Children and Youth with Special Health Care Needs. The shared plan of care goal for these grants is: "1. Care Coordination: By October 2017, states will increase by 20% over baseline, the % of targeted CYSHCN who have a Shared Plan of Care."1 Shared plans of care are a strategy to help achieve a "medical home" in which care is:• family-centered•coordinated• continuous•compassionate• comprehensive•culturally competent
What's In a Shared Care Plan?A shared care plan should have all the basic information important to efficient medical care of the child. This would include a short list of diagnoses, providers, hospitalizations/surgeries, medications, etc. Other considerations would include team roles, access to community resources, patient education resources, allergies, and emergencies. It is important that care plans are implemented in a way that is sensitive to the family's culture and goals for their child. There must also be consideration regarding health literacy and increasing involvement of children and youth in their own healthcare decisionmaking. See Resources section for examples of shared care plans.
How Can Families Partner with Professions on Shared Care Plans?Besides the primary care physician, parents are the ones most likely to have all the medical information about their child. This is particularly important during hospitalization. Families can let the team know of any precautions that need to be taken. For example, rather than just giving medications at the usual intervals, parents may have information from the pharmacy on which medications interact with others. Or perhaps specialists want to perform multiple procedures under anesthesia, some of which could be combined to reduce risk. Families can participate in shared decision making and better help coordinate the care of their child through use of a shared care plan. It is essential to remember that children will also need to learn to self-advocate for their healthcare. There is a great resource in English/ Spanish that children with special needs can use for regular doctor visits or post in their hospital room called "My Health Passport" (see Resources below). Parents of children with special needs can partner with their child's medical providers through the use of a shared plan of care. The primary care physician and specialists can also communicate effectively through the use of this tool. Shared care plans can reduce medical costs and, more important, result in better health outcomes for children with special needs and their families.
ABOUT THE AUTHOR: Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state's Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at spanadvocacy.org
References1. mchdata.hrsa.gov/dgisreports/Abstract/AbstractDetails. aspx?cbAbstractSummary=D70MC28872_2015_NonResearch_2&tb Keyword=&rbKeyword=All
Where do we go from here?
For many individuals with IDD, epilepsy often begins in childhood and has a significant impact on children and families. As children with epilepsy and IDD reach adulthood, while principles have been developed by consensus to guide the child neurologist, no specialized guidelines have been created for the adult neurologist that speak to the unique transition of care needs necessary for successful transition from pediatric to adult care. This represents a critical period as individuals with IDD with health conditions often have complex personal, social, and physical challenges which historically have been associated with difficulty in accessing quality healthcare compared to their non-IDD peers, resulting in health care disparities.
Epilepsy is the number one health complication that occurs in individuals with IDD. In childhood, neurological care is most often delivered by pediatric neurologists and advanced practice providers (nurse practitioner, physician assistant) and epilepsy nurse specialists. Pediatric neurologists have formalized training in pediatric and neurological medicine which provides a unique background to address the medical and psychosocial needs of patients and families.
Nursing has defined neurology as a specialty practice with certification of registered nurses. In the U.S., nursing programs that offer experience in the neurology specialty for AAPs are scarce. Care across the lifespan requires experience with the impact of cognitive impairments on daily life and understanding of the challenges around communication between caregivers and the medical team. Furthermore, family issues around adaptation, potential logistical and compliance difficulties for patients with IDD obtaining diagnostic testing, and risks of polypharmacy compound complexity of care. Unfortunately, neurologists trained in adult medicine do not typically have access to comparable training. They have limited exposure to adult patients with intellectual and devel opmental disabilities, and may demonstrate less familiarity with addressing quality of life and psychosocial issues compared to their pediatric neurology-trained colleagues. Therefore, the transition to adult care from pediatric care settings can be challenging for patients, families, and team members. The so-called "cultural gap" between pediatric and adult neurology models of care is further compounded by other systemic factors. For example, despite increased need for longer visits to achieve effective communication between the patient, caregivers and medical providers, care can be compromised by time limitations, a limited selection of neurology providers, poor reimbursement for time, and resource intensive care management for individuals with epilepsy and IDD. Transition thus represents a vulnerable period where satisfaction with care may be compromised, which may ultimately result in poor care resulting from the mismatch of issues and agendas.
NEURO TRANSITIONS FOR PEOPLE WITH IDD ROUNDTABLE
On April 26 and 27 2017, experts from across the US convened for the first-ever Neuro Transitions for People with IDD Roundtable in Boston, Massachusetts. This event was sponsored by Eisai, Inc. and the LEND Program at the University of Pittsburgh, with support from the American Academy of Neurology Special Interest Group in Adult IDD, and the American Academy of Developmental Medicine and Dentistry (AADMD). Dr. Seth Keller, Co-Chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and AADMD President—and a neurologist—organized and led the Roundtable discussions. The primary purposes of the meeting were to identify barriers to successful transition from pediatric to adult neurology, and to identify actionable solutions to those barriers.
"No specialized guidelines have been created for the adult neurologist that speak to the successful transition from pediatric to adult care."
"The Roundtable is a critical first step in improving the transition of youth with intellectual and developmental disabilities to adult neurology in order to improve continuity of care and health outcomes," commented Dr. Keller. "We have transition guidelines for youth who are neurotypically developing, and we have transition guidelines for kids with IDD in primary care and even in some subspecialties—but we lack guidelines for those patients with IDD undergoing transition in neurology care. That has to change." The Roundtable participants were chosen in a fashion that would create a multidisciplinary broad range of perspectives and expertise in the care and supports of individuals with IDD. Key leaders were chosen from the fields of pediatric and adult neurology, specialty IDD primary care, community based and national advocacy, Pharma, managed care, as well as university disability leadership. The meeting was facilitated by a national IDD public health leader and, over the course of a day and evening, the participants all began to discuss and flesh out the inherent issues within the current national neurology transitioning of IDD care practices. Specific recommendations were then selected, followed by the determination of action steps to enable this endeavor to be successfully implemented as a national effort to help make a real difference in neurology care.
Several key barriers were then determined as being significant impediments to care. These included:Transition Barrier: Lack of training and expertise in IDD and related education, and need for expanded education of providers, families about unique transition needs for patients with epilepsy and IDD. Transition Barrier: Gaps in information availability about transition tools and resources to healthcare providers, patients, caregivers, families and advocates, other healthcare providers.Transition Barrier: Inadequate healthcare financing/funding to ensure successful health care transition and coordination of care.Transition Barrier: Lack of neurology transition guidelines tailored to the needs of people with IDD and other complex health care needs such as epilepsy. Transition Barrier: The need for a unifying and team-focused health care model such as the Medical Home model which would be well-suited to individuals with IDD and other complex health care needs such as epilepsy.
Roundtable participants committed to action items with specific deliverables, timeframes and goals. Dr. Keller said, "We have work to do, so our expectation is to leave the Roundtable itself with action plans in hand, hold ourselves accountable, and reconvene no more than a year from now to report out on our progress. Doing nothing is not an option." For more information on the Neuro Transitions for People with IDD and its work, Dr. Keller can be reached at firstname.lastname@example.org •
David A. Ervin is Chief Executive Officer of The Resource Exchange, a Colorado-based nonprofit serving children and adults with intellectual and developmental disabilities (IDD). He has nearly 30 years' experience in the IDD industry, having worked in and/or consulted to organizations in the US and abroad.
Joan Earle Hahn, Ph.D., APRN, CDDN, EP magazine editorial board member, Past-President Developmental Disabilities Nurses Association, and nurse educator has over 25 years dedicated to improving the health of people with IDD.
Miya Asato MD is a pediatric neurologist and Associate Professor at Children's Hospital of Pittsburgh. She specializes in neurodevelopmental disorders and behavioral and cognitive difficulties associated with epilepsy. She is highly invested in medical and professional education and is Program Director for one of eight programs nationally in Neurodevelopmental Disabilities Residency, Associate Program Director for Child Neurology Residency at Children's Hospital of Pittsburgh.
Children with Disabilities are Among the Largest Minority Population Without Adequate Oral Healthcare
NumbersThe largest minority population in the United States without adequate dental care is individuals with disabilities.1 During the present decade, approximately 56.7 million residents (almost one-infive members of the population) have some form of disability (including 39.9 million individuals with severe disabilities). Specifically, there are more than 3 million children through age 17 years with severe disabilities. (Note: the Census Bureau annual American Community Survey only reports data for hearing and vision difficulties for children less than five years of age.) There are many differences in the proportion and numbers of residents with disabilities by gender, race/Hispanic origins, age, and types of dis abilities. There are greater proportions of persons with disabilities among: • Females than males – to a degree, reflecting the greater numbers of women in senior years. • American Indians & Alaska Natives, blacks and whites than Hispanics and Asians. • Older than younger populations. • Among individuals with ambulatory and cognitive disabilities than other disabilities The projected estimated proportion and number of individuals with severe disabilities are not available for the year 2030. A projection of 45.8 million residents with severe disabilities was developed using Census Bureau general total national population and state projections for the year 2030. In 2015 - The proportion of individuals with disabilities ranged from 9.9% in Utah and 10.3% in Colorado, to 19.4% in West Virginia and 21.4% in Puerto Rico. The estimated number of individuals with severe disabilities ranged from 71,000 in Wyoming and 76,000 in the District of Columbia, to 3,126,000 in Texas and 4,097,000 in California. In 2030 – Based on both the total number of state residents and proportion with disabilities for 2015, the estimated number of residents with severe disabilities will range from 65,000 in North Dakota and Wyoming, to 3,865,000 in Texas and 4,382,000 in California. 2,3 California. 2,3 Access to dental care poses a challenge for children (and adults) with developmental and acquired disabilities because of the lack of adequate dental insurance and difficulty finding a dentist who is trained and willing to care for young children or adults with simple or complex medical conditions. One would assume in the final decades of the last century that dental schools throughout the country were providing educational experiences in the care of individuals with special healthcare needs in response to the deinstitutionalization and mainstreaming of the individuals. Regrettably, we would be wrong.
Persons with a wide range of disabilities are now living in our communities. We now see them in the movies, television programs, malls and in our communities. Nevertheless, the Commission on Dental Accreditation (CODA) had not established standards to ensure the inclusion of such educational programs for the care of individuals with special healthcare needs in dental schools. Unfortunately, it was only through subterfuge that the Commission adopted a new standard for 2006 that educational programs in dental and dental hygiene schools in the U.S. were required to include some aspects of the preparation for the care of individuals with special needs. (See a report in a previous issue of EP Magazine for the details how this ruse was carried out.4) Although many practitioners do provide care for children (and adults) with disabilities, the reality is that for those dentists who completed their dental education prior to the development of formal school programs, there are few if any continuing education courses for the care of individuals with special needs. 5
Consequences"The (health) service most commonly reported as needed but not received was preventive dental care; 6.3 percent of children with special health care needs over all needed but did not receive care preventive dental care."6
And Children Become AdultsIn the U.S. during the past year, 60% of adults with disabilities, and 70% of individuals with no disabilities reported a dental visit.7
Prevention: The Best Medicine for Oral CareGood oral health, an important part of a person's total health, starts in childhood. Every child can have healthy teeth and gums. Children with good strong teeth are able to chew a wide variety of foods for healthy nutrition. Healthy teeth aid speech development by helping children make proper sounds for speaking clearly. In addition, clean healthy looking teeth help individuals look better and feel better about themselves.8"Children with special needs are a greater risk… With all the medical, nutritional, and emotional needs of children with disabilities, it is hard to find time for proper daily oral care. Getting the child to the dental office can be difficult, too. But preventing cavities and gum disease now is easier than correcting the problem later. Prevention can spare the child unnecessary pain and costly dental procedures." 8
Alternative Care in Special CircumstancesThe general recommendations for prevention of cavities and periodontal (gum) disease have been to brush your teeth twice a day with fluoride toothpaste, floss daily and visit your dentist twice a year. We now know that oral health must include treating the bacteria and chemistry of the mouth (the biofilm). Caries Management by Risk Assessment (CAMBRA) is a systematic approach that should be customized and initiated for every child or adult with special needs and might include probiotics (good bacteria that are either the same as or very similar to the bacteria that are already in our body), antimicrobials (an agent that kills microorganisms or stops their growth), baking soda, remineralizing agents, fluoride gels, varnishes rinses and sealants. Conditions requiring additional considerations would include patients with intellectual and physical disabilities and those with dry mouth, reflux and swallowing difficulties. Caregivers are important and must be educated to ensure an effective hygiene program will be implemented and monitored. It is also important to realize that oral health care can be delivered anywhere if a bathroom is non-accessible.
Finding a Dentist .It may not be an easy task to find a dentist who is trained, willing and able to treat children and adults with special health care needs. Many studies have demonstrated the reality that the more significant the disabilities, the more difficult it is to find a dental professional who is willing to provide the needed care. In addition, limitations in insurance coverage, the restrictions of the Medicaid system (e.g. the elective inclusion of dental service coverage for youngsters as they reach their adult years) and general lack of funding for state programs, may provide additional barriers for care.
So What is a Minority Population?The term "minority population" often is used of civil rights and collective rights which gained prominence in the 20th century. Members of minority groups are prone to different treatment in the countries and societies in which they live. "…discrimination may be directly based on an individual's perceived membership of a minority group, without consideration of that individual's personal achievement. It may also occur indirectly by social structures that are not equally accessible to all. Activists campaigning on a range of issues may use the language of minority rights, including student rights, consumer rights, and animal rights." 9 What about the rights of children with disabilities for needed oral health care?
ABOUT THE AUTHORS:H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor , Department of General Dentistry, Stony Brook University, NY. Steven P. Perlman, DDS, MScD, DHL (Hon), FACD is the Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry The Boston University Goldman School of Dental Medicine. Allen Wong, DDS, EdD is Professor and Director AEGD Program, Director Hospital Dentistry Program, University of the Pacific Arthur A. Dugoni School of Dentistry, San Francisco, CA.
References 1. Waldman HB, Perlman SP. The largest minority population in the U.S. without adequate dental care. Special Care in Dentistry, 37(4):159-163, 2017, 2. U. S. Census Bureau. 2015 American Community Survey 1 year estimates Available from: factfinder.census.gov Accessed July 3, 2017 3. U.S. Census Bureau. Interim projections of the total population for the United States and States: April 1, 2000 to July 1, 2030. Available from: census.gov/population/projections/files/stateproj/SummaryTabA1.pdf Accessed July 5, 2017. 4. Waldman HB. I'm a liar and proud of it! Or, my introduction to reality. Exceptional Parent Magazine. 2012;42(12):20-21. 5. Waldman HB, Wong A, Cannella D, Perlman SP. No one left behind. (Editorial) AGD Impact, (on line) e-10-e12, July 2010. 6. U.S. Department of Health and Human Services. The National Survey of Children with Special Health Care Needs Chartbook 2005-2006. Rockville, MD: Department HHS, 2007. 7. National Center on Birth Defects and Developmental Disabilities. Oral health and people with disabilities. Available from: cdc.gov/ncbddd/documents/Oral%20Health%20Tip%20sheet%20_ PHPa_1pdf Accessed July 1, 2017. 8. Perlman S, Fenton SJ, Friedman C, Chamalian D. Forewarned is forearmed. EP Magazine, 2001;31(6):79-81. 9. Wikipedia. Minority group. Available from: en.wikipedia.org/wiki/Minority_group Accessed July11, 2017.
THE NEW GENERATION OF DISABILITY-COMPETENT DENTISTS
The scarcity of dental providers is attributed to insufficient education in dental schools regarding treatment methods and unique needs of persons with developmental disabilities.
Adults with special needs have long been one of the most undertreated populations in dentistry. Many pediatric dentists are well equipped to treat children with special needs, but most general dentists are either untrained or unwilling to treat adults due to their lack of experience treating this population. Additionally, the lack of access to dental care prevents small dental problems from being caught early, resulting in the need for more costly and complex treatment.
Research has confirmed the greatest barrier in access to care for this population is a lack of trained dentists willing and capable to treat. The scarcity of dental providers is attributed to insufficient education in dental schools regarding treatment methods and unique needs of persons with developmental disabilities. All United States dental school curricula are required by the Council on Dental Accreditation to include minimal classroom didactic training regarding treatment of special needs patients. However, many students will never have the opportunity in school to actually treat a person with autism or cerebral palsy or Down syndrome. This lack of educational experience and exposure results in newly graduated dentists who lack confidence in treating patients with complex medical and behavioral needs. However nationwide, State and Federal policy changes are needed to create lasting solutions to the lack of dental care for adults with special needs. This begins with the education of students and extends to creating job opportunities for dentists after graduation, and affordable treatment for families already strapped with extra costs. The American Academy of Developmental Medicine and Dentistry (AADMD) has embraced this challenge with a bold effort to teach, mentor and support young dentists for the future while advocating for changes in a system of care that rewards isolated and infrequent crisis dental care. The old saying that an ounce of prevention is worth a pound of cure is appropriate. Preventing and reducing dental caries (cavities) is far less difficult than saving and repairing badly damaged teeth. Despite the deficiency in access to dental care for adults with special needs, awareness of this issue is growing through formation of student chapters of AADMD (American Academy of Developmental Medicine and Dentistry) in dental schools throughout the nation. The purpose of AADMD student chapters is to raise awareness of the obstacles faced by patients with special needs, educate students regarding successful quality dental care, and to engage students to promote national policies that will improve the needed access to healthcare. AADMD student chapters raise awareness of future dentists and within the special needs community. Chapters each fall advocate within their school by participating in efforts such as the "Spread the Word to End the Word" campaign, in which AADMD members encourage faculty and classmates to discontinue the pejorative use of the "R" word. Founded in 2002, the AADMD is growing and now recognized as a national organization of professionals promoting collaborative and integrated healthcare for people who have intellectual and developmental disabilities. Additional new members and student chapters are being created every year across the United States and in several countries. In 2015, the University Of Texas School Of Dentistry in Houston created the first AADMD chapter in the state of Texas. This chapter has hosted the annual AADMD national meeting, increased interest to spread throughout the state as students volunteer at events such as Special Olympics' Healthy Athletes venues and through Friend of Down Syndrome's "Buddy Walks". Students are encouraged to select rotations that will give them treatment experiences and learn to develop a "bond of trust" with patients with disabilities. Future plans for the Texas Chapter include a "Day of Special Smiles" in 2018 and partnering with the Baylor College of Medicine to learn the art of integrated and collaborative care.
In addition to increasing awareness of the disparity of care for adults with special needs in dental schools, existing clinics are adopting integrated collaborative care models to improve access and quality of care for this population. This model encourages health professionals to treat patients collaboratively, allowing for better continuity of care between the various healthcare specialties. An example of this integrated collaborative care model's success is apparent through the Lee Specialty Clinic in Louisville, Kentucky, where physicians, dentists, physical therapists, and other healthcare professionals work side-by-side to create interdisciplinary treatment plans. Health professionals nationwide have collaborated in the treatment of patients with special needs, which is through the Healthy Athletes program of Special Olympics, providing medical, dental, optometry screenings in a centralized, convenient location. The AADMD and Special Olympics International recently jointly signed a new partnership agreement at the annual meeting in Houston.
This new training opportunity of older clinicians will be demonstrated at next year's National Special Olympics games in Seattle. Perhaps the most important aspect of the collaborative care model is that healthcare providers may perform screenings for healthcare fields outside their primary field. These screenings allow small problems to be detected early so that patients may be referred to appropriate specialists for treatment before more extensive treatment is required. For example, some physicians have been trained to look for signs of cavities and taught to apply a cavity-arresting measure until the patient can receive definitive treatment by a dentist. Dental screenings by physicians help prevent tooth decay from progressing and decrease the likelihood of patients needing more extensive and traumatic treatment, such as root canals or extractions. Similarly, dentists can screen for medical conditions, such as hypertension and diabetes, and refer the patient to a physician if treatment or medication is needed. Collaborative care improves the likelihood that preventive treatment will not be delayed and minimizes health care costs.
In addition to changes made at dental schools and established clinics, national policies are needed to create a more lasting impact in creating access to healthcare for adults with special needs. Current policy regarding healthcare of patients with special needs not only restricts their access to dental care but also costs the country greatly. In 2015, more than $400 billion was spent on treatment, yet health data indicates that many disparities continue. More than a decade ago, then US Surgeon General David Satcher stated, "Reports sit on shelves, but actions are needed." That encouragement to the founders of the AADMD led to increased educational opportunity in medical and dental schools for future doctors to know how best to care for some of the nation's most vulnerable and improve their health. Policy changes promoting access to care would not only reduce costs by focusing on preventative care to avoid expensive and traumatizing emergency treatment, but also give patients more consistent quality treatment, and family members the peace of mind that their relative is receiving appropriate evidence-based care.
Spreading awareness regarding the barriers to people with IDD to acquire quality affordable healthcare is necessary.
Currently, the federal government defines "medically underserved" populations in terms of geographic and socioeconomic criteria; however, patients with disabilities are dispersed throughout their communities across the country and have various levels of income. People with intellectual and developmental disabilities (IDD) are "medically underserved" due to their lack of healthcare providers and affordability of care. New policies are needed to increase these patients' access to dentists who are equipped to treat them. The National Council on Disability report in 2009 states that "the absences of professional training on disability competency issues for healthcare practitioners is one of the most significant barriers preventing people with disabilities from receiv ing...effective healthcare." The United States' official health goals found in the document, "Healthy People 2020", proposes that courses on disabilities are needed in medical schools, dental schools, and post-graduate programs in order to prepare new graduates to treat this population. Allowing new graduates to further develop their skills in integrated IDD care clinic programs under the Health Services Resources Administration requires an official designation of people with IDD as being "medically underserved." Spreading awareness in the political and healthcare education arenas regarding the barriers to people with IDD to acquire quality affordable healthcare is necessary. Self-advocates, students, dentists, physicians and families are encouraged to advocate with their local dentists to provide the care they so sorely need. For further information, dentists can join the AADMD and find like-minded caring doctors at aadmd.org.
Although improvements have been made in providing access to dental care for adults with special needs, there is still a large disparity of care. Initiatives are being made, not only at local levels, such as formation of AADMD student chapters at dental schools, but also through nationwide policy changes providing improved access to care for adults with special needs. Health decision makers in many nations discount the importance of dental care for adults with intellectual and developmental disabilities. There is hope for the future that dental treatment will improve through the combined efforts of students and future dentists at both local and national levels.•