PRESENTER

Mariam Egal, MPH,LEND Fellow

Multicultural Training & Outreach Coordinator MN Department of Human Services,

Disability Services Division Mariam.egal@state,mn.us

651-200-8196 (Phone) 651-431-7563(Fax)

Objectives

n  Learn about the Somali community & culture to improve service delivery

n  Understand Somali perceptions on child development and

disability

n  Factors to consider when providing services and conducting assessments

n  Possess better understanding on how to engage Somali parents and families through communication, collaboration and participation 2

CULTURE

Source: 2010 U.S. Census

Somalis: Demographics in MN

35,760 Total MN Somali Population (Aggregated in Minneapolis

25 years Twin Cities Metro--Median Age for Somali resident (37, U.S. Population)

Mostly have Health Insurance ( MA, Ucare, Obama care)

$15,902

Median Household Income (Total MN $56,954)

44.5% Have less than a high school diploma in MN (only 15% have a Bachelor’s Degree or higher)

95% Speak a language other than English at home (Somali)

Divorce/separated rate for Somalis in MN escalating

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Somali Displacement and Reasons

–  Somalis migration started by 1990 because of civil war. •  Ongoing for 25 years

•  Est. Over 500,000 deaths

•  Est. >1 million refugees •  Others came as immigrants/students,

sea men as early 1920.

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Somalia: Geography

Somalia in Pictures

Somalia: In Pictures

Somalia: In Pictures

Somalia: In Pictures

Somalia: In Pictures

Somalia: In Pictures

Colonial Era

Somalia: A Brief History

Pre-colonial Somalia n  Historically, important site of trade and commerce n  Dominated by powerful Somali empires n  Land of Punt (frankinscence) and Lifestock. Colonial Somalia n  In the 19th century, Somalia was divided by the

British (modern day Somaliland state), French (modern day Djibouti) and the Italians (South and Central Somalia)

Somalia: A Brief History

Post-independence period n  Somalia declared independence in 1960 with

unification of British and Italian Somalilands (French Somaliland à Djibouti in 1974)

n  Two civilian administrations: Aden Abdullah Osman (1960-1967); Abdi Rashid Ali Sharmarke (1967-1969)

n  1969-1991: Muhammad Siad Barre seizes power in a bloodless coup, following assassination of Sharmarke

Somalia: A Brief History

The Siad Barre Years n  1969: Government adopts Socialism and aligns

with USSR n  1972: Adoption of written language n  Rural Literacy campaign n  1977: Somalia wars with Ethiopia over Ogaden

region n  1988-1990: War with Somaliland n  1991: Siad Barre is forced out of office; civil war

Somalia: A Brief History

Post 1991-present n  1991-2000: Country is embroiled in conflict n  2000-2012: A series of transitional

governments put in place facilitated by the UN n  2012: Election of country’s first federal

government since 1969

Family

v  Patriarchal Society v  Hierarchical v  Collectivist v  Marriages amongst extended family members

Religion

v  Almost all social norms, attitudes, customs, and gender roles among Somalis derive from Islamic tradition 1

v  Guidebook for life; solution to all worldly problems v  The Qu’ran is considered a medicine for all illness, including Autism

Clan Somali society is organized into clans

Social cohesion

Somalis are interconnected and interdependent. Orality reigns supreme in Somali culture, and facilitates connectedness and cohesion. Somali society has traditionally not been print-based; consequently spread of information occurs orally.

Cultural clash Somali children acculturate faster than parents, creating a tension between traditional Somali values and Western culture.

Somali Cultural Norms

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PERCEPTION ON DISABILTY & CHILD DEVELOPMENT

Somali Beliefs on Causes of Mental Health & Developmental Disabilities

§  Varies based on v  Level of acculturation v  Educational status

§  Supernatural cause (evil eye, magic, curse, possession by evil spirits & devil)

§  Karma/Xaq Darro

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Somali view on disability

n  Disability is from Allah

n  Developmental disability often conflated with mental illness

n  Developmentally disabled remain with their family,

from cradle to grave

Somali view on disability

n  At odds, with current model which emphasizes self-sufficiency in the most integrated setting

n  Responsibility shifts from parents to siblings

§  Caregiver’s main focus is on physical needs of the child

§  Child development occurs through interactions with peers and other family members

§  Greater emphasis on social markers of development, rather than physical development

Somali Perceptions on Child Development & Rearing Practices

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Factors to consider when providing services and

conducting assessments

Barriers in Addressing Mental Health & Developmental Disabilities in Somalis

n  Lack of knowledge about mental health & neuro-developmental disability.

n  Stigma and shame.

n  Lack of appropriate terminology in Somali language, e.g. no name for autism and other medical terminology associated with neuro-developmental disabilities.

n  Rigid concrete beliefs- no gray area ( you are either insane or sane).

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Barriers in Addressing Mental Health & Developmental Disabilities in Somalis

n  Lack of culturally sensitive providers and education material

n  Distrust of the system, western medicine, and providers

n  Not enough service providers, extremely lacking providers from within the Somali Community- Long waitlists, complex system

Factors impacting early identification

n  The individual level –  lack of knowledge about autism and available resources. –  denial or normalizing child’s behavior. –  stigma associated with disability.

n  Provider level - misdiagnosis - discrimination - language barriers Link to report : www.health.state.mn.us/divs/cfh/topic/autism/reports.cfm

Factors impacting early identification

System level

§  long wait lists to see specialist for diagnosis as well as treatment

§  problems navigating system and locating resources exacerbated by language barriers.

Link to report : www.health.state.mn.us/divs/cfh/topic/autism/reports.cfm

Psycho-social Effects of Caring for Individuals with Developmental Disabilities/Mental Health Issues

• Psychological (Stress, depression and other mental health concerns, Caregiver burn-out, Unresolved grief/Ambiguous Loss)

• Physical (Exhaustion, fatigue, low energy, unfocused, health issues such as chronic conditions)

• Social (Isolation, competing demands, lack of resources/supports)

• Financial (Insurance, housing, job loss)

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Reflecting Cultural Sensitivity

n  Have posters on the wall that depict people of different racial/ethnic groups

n  Have books, pamphlets, CDs, videos, in languages/cultures targeting communities you serve.

n  Have diverse staff reflecting cultural diversity n  Cultural competency training for all staff n  Customize your setting to accommodate people of

different ethnicities, gender, age, etc. e.g. private area for prayers, prayer rugs, prep bathroom

n  Be cognizant of religious and traditional holidays so you don’t set appointments on those dates.

COMMUNICATION STRATEGIES

Communication/Conveying Respect with the caregiver/parent

n  Build rapport and trust n  Be cognizant of who they are, demographics, Where

they gather (e.g. for Somalis 4th of July, ID, CSCM Confederation of Somali Community in MN, Somali American Parent Association, Local mosques, Somali daycares, Highrise low income apts

n  Explain why you must ask personal or sensitive questions

Communication/Conveying Respect with the caregiver/parent

n  Watch for patient’s verbal and non-verbal cues; allow patient to ask questions at frequent intervals ensuring that caregiver understands you.

n  Acknowledge non-traditional living situations (e.g., joint or extended families, homeless shelter)

n  Acknowledge the stigma attached to a diagnosis of a stigmatized condition(Know which type of questions to ask and avoid asking leading questions)

n  Do not ask about immigration status n  Provide appropriate health education in appropriate

mode

Communication/Conveying Respect with the caregiver/parent

n  Avoid over the top jargon/lingo/acronyms n  Practice “active listening” & mindfulness n  Ensure your own understanding by summarizing/reflecting/

paraphrasing n  Avoid judgment/criticism/own opinions n  Be empathetic, provide validation when needed n  Be cognizant of own tone of voice, body language, and set up

of environment n  Recognize the importance of community elders, spiritual

leaders or healers that families use for guidance and direction n  Some of these people will participate in family goals

Strategies For Working With Families Who

Speak Language Other Than English n  Introduce yourself to the interpreter and patient; explain ground

rules of interpretation and confidentiality n  Address patient directly, in the first person and make eye contact n  Check that interpreter is engaged in working with the patient; make

sure pace is appropriate and direct n  Give priority to family needs (Do they need an interpreter If so ask if

there is gender preference) n  Utilize experienced & knowledgeable interpreters preferable have

your own pool of interpreters trained and cognizant of mental health and developmental terminology.

n  Ask the family if they want an interpreter and involve them in the selection of interpreters.

n  Identify someone who is of the family’s culture and speaks the family’s language to facilitate family participation.

Strategies For Working With Families Who Speak Language Other Than

English n  Strive to offer interpreters for all the program’s activities, not just at

special times. n  Use the same interpreter at each meeting so that a new

interpersonal relationship does not have to be established each time.

n  Provide all written materials in the family’s preferred language. In addition, materials can be offered in other formats, such as video tapes and audiotape.

n  With families’ permission, tape record sessions and meetings in addition to keeping minutes some

n  families may not be literate in their own language. May use metaphors and euphemisms(make it as neutral as possible)

n  Direct, concrete communication may be a turn off n  Narrative story telling—be patient, ask more direct questions if

needed

Strategies For Working With Families Who Speak Language Other Than

English n  Traditionally, male head of household needs to be consulted but this

is changing (Ask if they want other family members present & who is primary contact)

n  Traditional Somalis believe that words have power i.e.) “May come true if talk about it” (May not follow through with getting child assessed, diagnosed—potentially viewed as asking for more problems to arise)

n  Show a genuine, sincere INTEREST in learning (Be inclusive of cultural/spiritual practices )

n  Be kind and empathetic n  Be cognizant of other issues and concerns they may be faced with and

offer support. n  Meet them “where they’re at” (May appear guarded and private,

sharing least amount of information necessary Assess relevant knowledge base, current motivation for change)

n  End the meeting in a positive manner assuring parent comprehension and satisfaction.

Follow-Up with Parents

n  Be sure to follow-up after a meeting n  Difficulties with families following-up/keeping

appointments (What are the barriers/reasons? What are potential solutions? What resources are needed?)

n  Need “hand-holding” (Balance between empowering & enabling learned helplessness “Tell, show, do it” …and repeat until can do on own)

n  Be persistent and don’t give up

RECOMMENDATIONS

Recommendations

n  Education

§  To educate all stakeholders parents in particular on early screening

§  Provide information in most appropriate mode (audio, video and in person)

§  Develop culturally specific resource centers housed in the community. (one stop center)

Recommendations

n  Establishing trust with the community §  Partnership formation and community capacity

building(community based organizations, ethnic daycares, ethnic TV/newspaper, parent

§  Diversity in the workplace

§  Auxiliary workforce development •  Paraprofessionals •  Peer-to-peer (parents) •  Identifying parent champions

Recommendations

n  Develop diverse work force § Recruit younger generation into the area of mental

health § All disciplines (Psychology, OT, Pediatrics, other mental

health units) §  Support educational opportunities through

incentives (Scholar ships for minorities in mental health profession)

§  Expanded languages and cultural options for ALL U.S. children starting early

Recommendations

n  Collaborate not compete! n  Talk, share resources!

§  Break down the silos § Create spaces where sharing is encouraged (local,

state, federal, global) via Summits and State Public Health Autism Resource Center (SPARC)

n  There is enough work for us everyone.

Recommendations

§  Build capacity in the system to provide culturally sensitive services and decrease wait times

§  Continue to address problems with access to insurance

coverage and costs §  Partner with community based organizations, ethnic

media, ethnic daycares and charter schools

Recommendations

n  Refer to the guidelines for CLAS: https://www.thinkculturalhealth.hhs.gov/Content/clasvid.asp

Meet them where they are

n  Annual event festivities, 4th of July independence day, ID day, Mosques, Daycares, Charter schools, Hi rise low income apts.

n  You can sponsor a table at those events and pass along your information.

Somali Community Based Organizations in MN

1. CSCM Confederation of Somali Community in MN 420 15th Avenue South, Minneapolis, MN 55454

www.csc-mn.org. Tel. 612-250-9660 2. Somali American Parents Association 1929 S 5th St #101, Minneapolis, MN 55454 612-359-4949 3. Ka Joog 1420 S Washington Ave, Minneapolis, MN 55454 612-255-3524

Conclusion

n  Mostly refugees

n  Three waves, Early settlers (mostly seamen arriving as early as 1920’s), Students from 1950’s, and Refugees from 1990’s.

n  Over 1/3 of Somalis are displaced across the globe mainly in the US, Canada, UK, Scandinavian countries, New Zealand, Australia, Italy, United Arab Emirates.

Somalis

n  In the US mainly in MN, Ohio, DC area, New York, Maine, Washington, California, Massachusetts… n  In spite of it all, in our state, they have

integrated fairly well with elect officials, professionals in high rank positions (CEO’s), parent advocate who made effective policy change, educators (highest percentage of minority graduation), entrepreneurs, etc.

n  DHS ASD Advisory Council membership expands to include many new Somali parent members.

n  Early Intensive Developmental and Behavioral Intervention Benefit (EIDBI) will roll out in 7/1/2015

n  Somali Parents’ Autism Network support group is officially a 501C3 led solely by Somali Parents of Children with autism.

n  Cultural competency training/Autism basics and trends in multi-cultural families in MN provided to our metro counties and is on-going.

What is working

What is working

n  Cultural competency training and trends in multi-cultural families in MN provided to Autism CTSS providers on an on-going basis.

n  Disseminated ACT Early Lean the signs translated material to county regions, Hi rise low income apts, local mosques, Somali owned daycares.

n  Training for parents of children with autism is on-going. Connecting parents for more support group formation.

n  DHS is part of the Somali Disability Resource Network collaborative focusing on giving Somali individuals with disabilities opportunities to build their capacity to navigate and access disability resources and services that will help support them.

n  Cultural competency training provided to University of Minnesota’s Developmental-Behavioral Pediatric faculty.

n  Hennepin County Neurodevelopmental Disability Workgroup focusing on promoting early childhood screening and promoting retention and follow through.

What is working

n  Somali parents of children with autism are engaged more so then ever.

n  Interagency collaboration on promoting screening early intervention ECCS Advisory.

n  Interagency collaboration to implement the Legislative Task Force’s Autism strategic plan.

What is working

ASD Related Free Translated Material

CDC’s free Act Early materials to order: n  http://wwwn.cdc.gov/pubs/CDCInfoOnDemand.aspx?ProgramID=2 n  http://www.cdc.gov/ncbddd/actearly/downloads.html#languages MN DHS Pathways To Services for Children with Autism MDH link with Autism Fact Sheet translated to 3 languages: n  http://www.health.state.mn.us/divs/cfh/topic/autism/index.cfm For copies of the Developmental Milestones wheel in different languages n  Minnesota Department of health, MN Children with Special Health Needs n  PO Box 64882, St. Paul, MN 55164 n  IC #141-0761

Additional Resources

n  The Somali Literacy Project. (2015, June 25). Resources page. Retrieved from

http://thesomaliliteracyproject.com/resources n  http://www.hiiraan.com/news4/2015/apr/98904/

april_is_the_autism_awareness_month.aspx

References Mcalpine et al. (2014). A qualitative study of families of children with Autism in the

Somali community: comparing the experiences of immigrant groups. Report for the Minnesota Department of Health. Accessed from http://archive.leg.state.mn.us/docs/2014/mandated/140404.pdf

Barnevik-Olsen,M., Gillburg, C., & Fernell,E. ( 2008). Prevalence of autism in children

born to Somali parents living in Sweden: a brief report. Developmental Medicine & Child Neurology, 50(8), pp.598-601

Hewitt et al. (2013). Minneapolis Somali Autism Spectrum Disorder Prevalence Project.

Retrieved from http://rtc.umn.edu/autism/

http://lend.umn.edu/docs/ASD_and_Culture_FINAL.pdf

Additional Literature

Kediye, F., Valeo, A. & Berman, R. C. Somali-Canadian mothers’ experiences in parenting a child with autism spectrum disorder. Journal of the Association for Research on Mothering, 11(1), 211- 223 Mandell et al. (2009). Racial/ethnic disparities in the identification of children with Autism Spectrum

Disorders. American Journal of Public Health, 99(3), pp.493-498

Acknowledgments n  Fatima Molas, and the amazing Somali parents in

Minnesota n  MN Department of Human Services n  MN Department of Health n  Centers for Disease Control and Prevention n  University of Minnesota’s Institute on Community

Integration –  MN LEND –  MN Act Early