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HEALTH DISPARITIES AMONG LATINOS WITH DISABILITIES Irene Cihon Dietz, MD Lisa Torres,MD August 26. 2016


Health Disparities Among Latinos with Disabilities Goals and Objectives Identify prevalence of specific chronic conditions/disabilities over represented in the Latino community. Review how traditional culture and lifestyle may affect these conditions Discuss obstacles to health care access for Latinos with chronic conditions/disabilities Highlight how a medical home such as the MetroHealth Comprehensive Care Program may ideally remove obstacles and affect outcomes for Latinos with chronic conditions/disabilities


ISSUES OF RACE, POVERTY, CULTURE AND HEALTH


Hispanics are the largest and the fastest growing racial/ethnic minority group in the United States according to the U.S. Census Bureau.


Preterm Births, 2014

NOTES: Preterm births are based on the obstetric estimate of gestational age and are for all singleton births. SOURCE: CDC/NCHS, Health, United States, 2015, Figure 20. Data from the National Vital Statistics System (NVSS).


Infant Mortality Rates

SOURCE: CDC/NCHS, Health, United States, 2014, Figure 19. Data from the National Vital Statistics System (NVSS).


Life expectancy at birth

NOTE: Life expectancy data by Hispanic origin were available starting in 2006 and were corrected to address racial and ethnic misclassification. SOURCE: CDC/NCHS, Health, United States, 2015, Figure 18. Data from the National Vital Statistics System (NVSS).


Children with obesity, 2011–2014

NOTE: Obesity is defined as a body mass index at or above the sex- and age-specific 95th percentile of the CDC growth charts. SOURCE: CDC/NCHS, Health, United States, 2015, Figure 22. Data from the National Health and Nutrition Examination Survey (NHANES).


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CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS MetroHealth Comprehensive Care Medical Home, over 50 years in care


Specialty Care for Persons with Disabilities Children and Youth with Special Health Care Needs (CYSHCN) The federal Maternal and Child Health Bureau defines children with special

health care needs (CSHCN) as: “those who have or are at increased risk for a chronic physical, developme ntal,behavioral, or emotional condition and who also require health and rel ated services of a type or amount beyond that required by children general ly�


National Survey of Children with Special Health Care Needs The National Survey of Children with Special Health Care Needs (NS-CSHCN) was conducted three times between 2001 and 2010. It was designed to take a close look at the health and functional status of children with special health care needs in the U.S.—their physical, emotional and behavioral health, along with critical information on access to quality health care, care coordination of services, access to a medical home, transition services for youth, and the impact of chronic condition(s) on the child’s family. The NS-CSHCN was a telephone survey led by the National Center for Health Statistics at the Centers for Disease Control and Prevention under the direction and sponsorship of the federal Maternal and Child Health Bureau (MCHB). The survey is currently being integrated into the National Survey of Children’s Health, but will still provide the same in-depth look at the lives of children with special health care needs. See the MCHB website for more information on the 2016 National Survey of Children's Health administration, methodology, survey content, and data availability.


Results CYSHCN

According to the 2011/12 National Survey of Children with Special Health Care Needs: Approximately 14.6 million children ages 0-

17 years in the United States (19.8%) have special health care needs. Prevalence of CSHCN ranges from 14.4% to 26.4% across the 50 states and th e District of Columbia. About 65% of CSHCN experience more complex service needs that go beyon d a primary need for prescription medications to manage their health conditi

on.


Developmental Screening AAP since 2006 has recommended standardized screening National Survey of Children’s Health in 2007, showed that only 19.5% of parents of 10-month to 5year-olds reported completing SDBS during their child’s medical visit. Rates across states ranged from 10.7% to 47 %, with only three states above 30% (National Survey of Children’s Health, 2007). When pediatricians were surveyed in 2002 (55% response rate), only 23% self-reported always or almost always using SDBS (Sand, et al., 2005). In a separate survey of over 500 pediatric and family physicians (49.3% response rate), just over 50% reported using standardized instruments for developmental screening (Sices, Feudtner, McLaughlin, Drotar, & Williams, 2003). By 2009, based on the AAP Periodic Survey of Fellows, the rates of pediatricians self-reporting always or almost always using some form of SDBS had increased to 48% (Radecki, et al., 2010).


Developmental Delay/Disability Developmental delay is “the inability of a child to acquire developmental milestones at the expected age� (Aly, Taj, & Ibrahim, 2010). I 5-10% percent of the global population of children has some type of developmental delay or disability, and seventeen percent of the children in the United States have a documented

disability, either behavioral or developmental (Aly, et al., 2010). Standardized developmental and behavioral screening (SDBS) involves the use of validated, standardized measures to assess a child’s development in areas such as gross and fine

motor, language, social, and self-help/behavior. SDBS has been reported to increase rates of identification of developmental delay from 20%-30% to as high as 70%-90% (Brothers, Glascoe, & Robertshaw, 2008; Palfrey, Singer, Walker, & Butler, 1987; Sand, et al., 2005; Squires, Nickel, & Eisert, 1996).


Developmental Screening with Recent Immigrant and Refugee Children: A Preliminary Report Author(s): Susanne P. Martin-Herz, MD, PhD; Talya Kemper, MS; Megumu Brownstein, MSW, MPH; John F. McLaughlin, MD Reviewer(s): Kathy TeKolste, MD ; November 28, 2012


AUTISM Identification is key to early intervention services and drives adult outcome, yet remains very difficult for non-English speaking children, and social skills are different based on culture


CDC Autism and Developmental Disabilities Monitoring Network, ADDM


ASD Facts The percentage of children identified with ASD ranged widely across geographic area. low of 1 in 81 or 1.2% in areas of South Carolina to a high of 1 in 41 or 2.5% in areas of New Jersey.

Boys were 4.5 X more likely than girls. Among children identified with ASD who had IQ scores available, about a third also had intellectual disability.

About 43% of children identified with ASD were evaluated for developmental concerns by age 3 years. Black and Hispanic children were less likely to be evaluated for developmental concerns by age 3 years than white children. Even though ASD can be diagnosed as early as age 2 years, most children were not diagnosed with ASD by a community provider until after age 4 years.


Pediatrician Identification of Latino Children at Risk for Autism Spectrum Disorder; Katharine E. Zuckerman, MD, MPH, Kimber Mattox, BS, Karen Donelan, EdM, ScD, Oyundari Batbayar, Anita Baghaee, BS, and Christina Bethell, PhD,MBA, MPH: Pediatrics PEDIATRICS Volume 132, Number 3, September 2013


Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Diagnosis and specialty services were compared between 48 Latino and 56 nonLatino White children diagnosed with ASD, and factors that contribute to differences are explored. Latino children were diagnosed almost one year later than White children, received fewer specialty services, and had higher unmet service needs.

Factors that accounted for differences in the number of services received were maternal level of education and the number of sources of knowledge about autism.

MagaĂąa S1, Lopez K, Aguinaga A, Morton H. Intellect Dev Disabil. 2013 Jun;51(3):141-53. doi: 10.1352/1934-955651.3.141.


Parental limited English proficiency and health outcomes for children with special health care needs: a systematic review. One in 10 US adults of childbearing age has limited English proficiency (LEP). Parental LEP is associated with worse health outcomes among healthy children. Literature Review: PubMed, Scopus, Cochrane Library, Social Science Abstracts,

bibliographies of included studies. Key search term categories: language, child, special health care needs, and health outcomes. LEP parents were substantially more uninsured and had no usual source of care or medical home. LEP parents were also less likely to report family-centered care and satisfaction with care. Disparities persisted for children with LEP parents after adjustment for ethnicity and socioeconomic status.

Eneriz-Wiemer M1, Sanders LM2, Barr DA3, Mendoza FS4. Acad Pediatr. 2014 Mar-Apr;14(2):128-36. doi: 10.1016/j.acap.2013.10.003.


MetroHealth Autism Assessment Clinic (MAAC) Systematic Screening of all children in Primary Care , including MCHAT in Spanish readily available at WCC visits 18 through 48 months Children failing MCHAT referred for Psychology intake, IQ testing as necessary in

native language <6 years are then evaluated by Speech and Language Therapy, Pediatric Psychology/Neuropyschology , Developmental Pediatrics

Feedback and resource meeting within weeks of evaluation Direct contact to CCBDD liaison, Cleveland Municipal School District/Other Preschool Intake, Community Mental Health and ABA services whenever possible


SPINA BIFIDA Requires life long complex care services


Spina Bifida/Myelomeningocele Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD). Spina bifida can happen anywhere along the spine if the neural tube does not close all the way. The backbone that protects the spinal cord does not form and close as it should. This often results in damage to the spinal cord and nerves. Spina bifida might cause physical and intellectual disabilities that range from mild to severe. The severity depends on: • The size and location of the opening in the spine. • Whether part of the spinal cord and nerves are affected.

La espina bífida (EB) es un grave defecto congénito que afecta la columna vertebral del bebé. La EB es un tipo de defecto del tubo neural, un canal estrecho que se pliega y cierra durante la tercera y cuarta semana del embarazo para formar el cerebro y la médula espinal. La EB ocurre cuando la porción del tubo neural que forma la médula espinal no se cierra completamente durante el primer mes del embarazo.


Spina Bifida Each year, about 1,500 babies are born with spina bifida. Hispanic women have the highest rate of having a child affected by spina bifida, when compared with non-Hispanic white and nonHispanic black women.

Data from 12 state-based birth defects tracking programs from 1997-2007 were used to estimate the total number of pregnancies affected by spina bifida compared to the total number of live births (also called the prevalence of spina bifida) for each racial/ethnic group: •

Hispanic: 3.80 per 10,000 live births

Non-Hispanic black or African-American: 2.73 per 10,000 live births

Non-Hispanic white: 3.09 per 10,000 live births

Complications related to Spina Bifida: Inability to walk, or need assistance Hydrocephalus, or water of the brain and need for shunt Inability to control bowel or empty bladder requiring catheterization to stay dry Scoliosis and hip related issues, Orthopedic complication Care is recommended by a team with Neurosurgery, Orthopedics, Urology and DBP


400 mcg per day for all women of reproductive age


National Birth Defects Prevention Network (NBDPN)

The NBDPN is a group of individuals involved in birth defects surveillance, research, and prevention. assesses the impact of birth defects, on children, families, and the healthcare system identifies factors that can be used to develop primary prevention strategies and assists families and their providers in the prevention of secondary disabilities.


Hispanic/Latina women Have the highest rate among women having a child affected by these birth defects. [Read summary] Have lower blood folate levels and are less likely to consume foods fortified with folic acid. [Read article(http://www.cdc.gov/mmwr/preview/ mmwrhtml/mm5136a2.htm)] Are less likely to have heard about folic acid, to know it can prevent birth defects, or take vitamins containing folic acid before pregnancy. [Read article(http://www.cdc.gov/mmwr/preview/ mmwrhtml/rr5006a1.htm)]


Graph entitled Spina bifida patient outcomes by race/ethnicity : NSBPR 2009-2012 - Other includes Asians, Native Americans, Hawaiians and non-Hispanic Whites. For the purposes of this study, these groups have been combined because their characteristics were similar. *Other includes Asians, Native Americans, Hawaiians and non-Hispanic Whites. For the purposes of this study, these groups have been combined because their characteristics were similar.


â&#x20AC;˘This research reflects health outcomes among patients 22 years and under because most clinics in this study were pediatric clinics. The continence analyses were limited to patients five years or older, and the community ambulatory analyses were limited to patients two years or older. â&#x20AC;˘Patients were classified as having private health insurance if they reported health insurance coverage from a commercial plan. Patients were also classified as having private health insurance if they reported both private health insurance and public assistance or health insurance from a federally funded medical program, such as Medicaid.


MENTAL HEALTH STIGMA IN LATINO POPULATIONS No Estoy Loco/Iâ&#x20AC;&#x2122;m Not Crazy Understanding the Stigma of Mental Illness in Latinos Elizabeth J. Kramer, Peter Guarnaccia, Cynthia Resendez, and Francis G. Lu


Diversity of Latino Cultures Dimensions include country of origin, immigration status, language use, ethnic and racial background, religious and spiritual beliefs, and generation in the United States. Mexicans are the largest group of Hispanic immigrants, with extremely diverse in terms of immigration and generation. Some Latino individuals in states like Arizona and New Mexico trace their families back more than 10 generations in the same communities, before this region was part of the United States. Mexican immigrants primarily speak Spanish, but a growing number of newly arrived individuals speak a range of indigenous languages. Mexican cultures are a rich mix of Spanish and Indian heritages. Puerto Ricans are the next largest group, accounting for 10 percent of the Latino population on the U.S. mainland. Puerto Ricans have been U.S. citizens since 1917, regardless of whether they lived on the Island or on the mainland. Puerto Rican culture is a rich mix of African, Indian and Spanish cultures and shares a Caribbean culture with Cubans and Dominicans. As with Mexicans, Puerto Ricans born and raised on the mainland have developed a Nuyorican culture, which has been a rich source of music and poetry.

No other Latino group accounts for more than 5 percent of the total Latino population. Cubans, Dominicans and Salvadorans are the next largest groups of Latinos. Cubans


Language affects diagnosis of mental illness Language is a very culture-specific medium (Berry et al., 1992). Language influences emotional expression. In individuals who are fluent in more than one language, there is conflicting evidence as to which language (oneâ&#x20AC;&#x2122;s native or second language) most promotes or inhibits the display of emotion (Malgad et al,1987;). People who are bilingual in English and Spanish express themselves differently in the two languages. Several studies have found that bilingual individuals tend to express more psychopathology and disclose more personal information when interviewed in Spanish, while remaining more emotionally withdrawn in English (Guttfreund, 1990; Marcos, 1976; Price & Cuellar, 1981). An individual who is highly acculturated to the American culture and highly fluent in English may express more emotion in English, compared to a less acculturated, less fluent individual. Spanish expressions, many with cultural meanings are frequently used in describing mental illness in Latinos.


Religion The majority of Latinos in the United States identify themselves as Christian, with approximately 90% declaring themselves Catholic. Latino elders have been shown to become more active in religious activities as they age (Stolley & Koenig 1997). In addition to ascribing to religions such as Catholicism and Protestantism, Curanderismo, Santeria, and Espiritismo also may be included in the belief systems of some Latino subgroups. Latinos are quite likely to seek the help of curanderos or clergy prior to seeking medical care for their illnesses. When they do seek help it is likely to be through primary care providers (Vega et al., 1999).


Curanderismo is a diverse folk healing system practiced by many Mexican Americans, which includes beliefs originating from Greek humoral medicine, early Judeo-Christian healing traditions, the Moors, and Native American traditions. A main tenet of this belief system is that illness is caused by natural forces, surpernatural forces, or a combination of the two. Examples of beliefs include suerte (luck), susto (soul or spirit loss resulting from a traumatic event), mal de ojo (the evil eye), caida de la mollera (fallen fontanel). Healing practices may include physical and supernatural healings via limpias (spiritual cleansings), prayer, massage by sobadores, and herbal preparations (Luna 2003; Padilla et al 2001; Keegan 2000; Gafner & Duckett 1992). Healing is administered by Curanderos, who have a divine gift (don) for healing, (Applewhite 1995), sobadores, yerberos, and espiritualistas (Lopez, 2005).


Santeria a religious system that blends African (Yoruba tribe) and Catholic beliefs, and is practiced by Cuban Americans and other Caribbean ethnic groups. May include elements of spiritualism and magic. Beliefs include that oricha saints (identities based on a combination of African deities and Catholic saints) may influence people on earth, embrujamiento (casting spells), and mal ojo (evil eye). Healing practices include despojamientos (expelling bad spirits), amulets, magic medicines, animal sacrifice, and care of blessed animals. Santero group beliefs and practices may vary, based on the needs of the group or the Santero priest (Baez & Hernandez 2001; Alonso & Jeffrey 1988; Suarez et al 1996).

Espiritismo a spiritual belief system practiced by many Puerto Ricans in Puerto Rico and in the US. beliefs in reincarnation and the power of mediums. Individuals are affected by fluids, which are spiritual emanations that surround the body. These fluids are derived from a combination of the individualâ&#x20AC;&#x2122;s spirit, spirits of the deceased, and the spirits of others close to the individual. Mental and physical illnesses are the result of fluids either being sick or disturbed. Fluids may be negatively affected by karma (past actions influencing the present), religious negligence, brujeria (witchcraft), spirits, mal ojo (evil eye), and inexperienced mediums. Healing practices include prayer, group healings, house cleansings, personal cleansings with herbal baths, and possession trance (Harwood 1977; Richeport 1975, 1982, 1985 as cited by Hohmann et al 1990; Baez & Hernandez 2001)


Use of Herbal Medicines include spearmint, chamomile, aloe vera, garlic, brook-mint, osha, lavender, ginger, ginseng, camphor, rue, anise, wormwood, orange leaves, sweet basil, oregano, peppermint and lime (Zeilmann et al., 2003; Rivera et al., 2002; Trotter, 1981), marijuana tea (Pachter 1994). Tila (Linden flower) tea and Sarsaparilla may be used for nervous disorders (Pasquali 1994). Mercury (Azogue) may be used (Pachter 1994) by elders practicing Espiritismo or Santeria, as it is believed to provide good luck and protection from evil and the envy of others (Zayas & Ozuah, 1996).


Mexican American Prevalence and Services Survey (MAPSS) Study and the National Latino and Asian American Study. 25% of European Americans met criteria for any depressive diagnosis in a large national study, whereas less than 20% of Latinos met criteria for depressive disorders rates of depressive diagnoses were higher for Puerto Ricans and Cubans and lowest for Mexican immigrants. Latinos tend to report higher rates of phenomena consistent with psychotic symptoms than other ethnic groups in both clinical and epidemiological studies of mental health. Yet, in most studies of Latinos compared to other ethnic groups, the diagnoses of depressive disorders among Latinos far outnumber diagnoses of psychotic disorders.


Locura A term used by Latinos in the United States and Latin America to refer to a severe form of chronic psychosis. The condition is attributed to an inherited vulnerability, to the effect of multiple life difficulties, or to a combination of both factors. Symptoms include incoherence, agitation, auditory and visual hallucinations, inability to follow rules of social interaction, unpredictability, and possible violence.â&#x20AC;?


MetroHealth The City of Cleveland was founded in 1836 May 6, 1837 Cleveland City Council designated an infirmary as City Hospital and made chronically ill,

aged, mentally impaired, the poor, and persons with special health care This City hospital is now modern day MetroHealth, 179 years later. In 1899, a Children's Hospital was added to the City Hospital. Infectious diseases such as measles, mumps and polio were widespread, and

the City Hospital then served as a founding institution for addressing infant mortality and pediatric infectious diseases.


The Beginnings of CompCare Dr. Fredrick C. Robbins, Professor of Pediatrics and Contagious Disease, joined the staff of the City Hospital as the Chair of Pediatrics in 1952. Robbins emerged a leader in Pediatric Infectious Disease, and was awarded The Nobel Prize in Physiology or Medicine 1954 jointly with John Franklin Enders, and Thomas Huckle Weller for their work with polio. Around 1959, a group of parents of “children with medical handicaps”, those with bodies ravaged from polio or other infections, and those with congenital problems, approached Dr. Robbins. Together they envisioned a primary care clinic devoted to the care of children with special health care needs – the beginning of the then Comprehensive Care Program for Children with Medical Handicaps, the now over 55 years later the MetroHealth Comprehensive Care Medical Home.


Forging Lifelong Relationships Robert Bilenker, MD, became the director of Comprehensive Care from 1974 - 2004, and forged an enduring affiliation with the Cuyahoga County Board of Developmental Disabilities for now over 35 years. The CompCare Program has, since its inception, served the needs of children with medical fragility, intellectual disability, complex medical needs and technology dependence. In 2003 the program expanded to provide seamless transition for adults with special health care needs. Over the past then 50 years the program has touched the lives of more than 25,000 persons with disabilities.


What is Comprehensive Care? The MetroHealth Comprehensive Care Program is a Medical Home for patients of all ages who have Special Health Care Needs. (CYASHCN) In 2011 it was the first practice at MetroHealth to be awarded a NCQA (National Center for Quality Assurance) Level 3 Recognition (the highest possible level) for Excellence of Care

The MetroHealth Comprehensive Care Team addresses the physical, developmental, and behavioral issues of special needs patients from infants to adults. This approach to care is especially beneficial for patients with chronic illness and complicated medical conditions that may arise with intellectual disabilities, autism, spina bifida, cerebral palsy, craniofacial disorders, chromosome disorders, and metabolic diseases.


What is Comprehensive Care? The MetroHealth Comprehensive Care Program is a Medical Home for patients of all ages who have Special Health Care Needs. (CYASHCN) In 2011 it was the first practice at MetroHealth to be awarded a NCQA (National Center for Quality Assurance) Level 3 Recognition (the highest possible level) for Excellence of Care The MetroHealth Comprehensive Care Team addresses the physical, developmental, and behavioral issues of special needs patients from infants to adults. This approach to care is especially beneficial for patients with chronic illness and complicated

medical conditions that may arise with intellectual disabilities, autism, spina bifida, cerebral palsy, craniofacial disorders, chromosome disorders, and metabolic diseases.


MetroHealth Comprehensive Care Integrated Care Specialty Clinics • One clinic visit, patient is seen by BCMH Clinic coordinator, physician, neurology, dietician, physical therapist, neurosurgery, dentist, genetics, social work, and CCBDD liaison—Avoids the need for multiple appointments • Post clinic conference held by team to discuss patients, letter sent out to summarize for patient, and information binders are given to patient • Cerebral Palsy • Spina Bifida/Hydrocephalus • Cranio-Facial Disorders NDD/Peds, ENT, Plastic Surgery, Audiology, Dentistry, Orthodontics, Genetics, Social Work

Parent Advisory Group - support for families, but also an outlet where families can offer advice to providers on how to improve the practice.


MetroHealth Integrated Care Dentistry – attends specialty clinics for triage and planning, on call to come to do screens for adults as necessary MAAC Clinic – MetroHealth Autism Assessment Clinic • SW, NeuroPsych, SLTx, DBP assessment for 18 month to 5 years

Mental Health • CompCare Providers have developed expertise in managing behaviors and assessment, but now have direct MH links side by side • Pediatrics : Pediatric Psychology Interns available during general clinics for handoffs to address acute issues such as child behavior, parenting concerns, depression, ADHD, etc.


Comprehensive Care Team • Irene Dietz, MD- Medical Director, NDD/BDP/PEDS/HPCM • Lisa Torres, MD –Adult Program IM/Peds • Emmanuel Boakye,MD, =IM/Peds • Ronald Magliola, MD - IM/Peds • Sarah Bodrock, RN - Care Coordinator • Christine Crump,RN - Care Coordinator

Sarah Woernley, RN - Care Coordinator Sarah Upton , RN -Triage Nurse Kathie Cika, RN -Clinical Nurse •Jayna Chelm , RD, LD - Dietician •Calley Kish . LISW - Social Worker •Amy Andler- CCBDD Community Health Services Liaison •Tim O’Malley- CCBDD Community Health/Nursing Administrator


MetroHealth Resources Interpretation/Language Services: Interpreter Service • If English is not your primary language and you are having difficulty communicating, our interpreter service can help. Call 216-778-5452. • METROHEALTH SYSTEM CUENTA CON EMPLEADOS QUE HABLAN ESPAÑOL Y TAMBIÉN OFRECE ACCESO A INTÉRPRETES A TRAVÉS DEL TELÉFONO PARA AYUDAR AL PACIENTE A CONCERTAR UNA CITA MÉDICA, HABLAR CON PACIENTES HOSPITALIZADOS, CON PACIENTES NO HOSPITALIZADOS O AYUDAR CON LOS PROCEDIMIENTOS Y SERVICIOS FINANCIEROS. • PARA OBTENER MÁS INFORMACIÓN, POR FAVOR LLAME AL 216-778-3466.

Services for Individuals with Hearing Impairments • TTY/TDD (Teletypewriter of Telecommunications Device for the Deaf) is available. Interpreter services can be arranged. Ask for your nurse to make arrangements for an interpreter through the Department of Social Work.

Deaf Talk TV • Deaf Talk TV for sign language interpretation is available on every nursing unit. Each nursing unit has a designated room where a TV unit can be connected and sign language interpretation is available within five minutes. There is no need to schedule the interpretation — it is available 24 hours every day. If you are interested, please speak with your nurse and arrangements will be made with the Social Work office.



Health disparities among latinos with disabilities