Improving the Quality of Improving the Quality of Health Care Delivery for Health Care Delivery for Children With Special Children With Special

Health Needs Health Needs

A Qualitative Needs Assessment A Qualitative Needs Assessment for Somali Families With Autistic for Somali Families With Autistic

ChildrenChildren

Huda Farah, MSHuda Farah, MS

A needs assessment of Somali families A needs assessment of Somali families of Children with autism was conducted of Children with autism was conducted by Deka Ahmed and Huda Farah in by Deka Ahmed and Huda Farah in 2009 in Minneapolis Minnesota, under 2009 in Minneapolis Minnesota, under the umbrella of HEAL Institute.the umbrella of HEAL Institute.

Conducted among parents of children Conducted among parents of children with autism and daycare professionals with autism and daycare professionals who serve the Somali community.who serve the Somali community.

Background Background

Somalis in Somalis in Minnesota from Minnesota from 1993 - 20101993 - 2010 DemographicsDemographics Socioeconomic Socioeconomic

and Education and Education statusstatus

Refugee Refugee Experience Experience

History of Autism in The History of Autism in The Somalis Community of Somalis Community of

MinnesotaMinnesota 2006 noticed increase number of Somali children 2006 noticed increase number of Somali children

with developmental delays with developmental delays

2007 2007 “HIIL NAAFO”“HIIL NAAFO” for CICC for CICC

2008 Presentation for Refugee task force, WCCO 2008 Presentation for Refugee task force, WCCO report, Somali ASD initiative, Community Forumreport, Somali ASD initiative, Community Forum

2009 MDH report, and issues with data collection 2009 MDH report, and issues with data collection http://www.health.state.mn.us/ommh/projects/autihttp://www.health.state.mn.us/ommh/projects/autism/report090331.pdfsm/report090331.pdf

Professionals Forum & needs assessment Professionals Forum & needs assessment research, other research attempts (vitamin D )research, other research attempts (vitamin D )

Why This Study?Why This Study? According to CDC autism is an urgent public According to CDC autism is an urgent public

health concern health concern For Somalis this is a new disease, for the For Somalis this is a new disease, for the

first generation, most of the children are on first generation, most of the children are on the severe end of the spectrum, and most the severe end of the spectrum, and most families have multiple children with ASDfamilies have multiple children with ASD

Families are facing multiple barriers Families are facing multiple barriers (systems, cultural, language, immigration, (systems, cultural, language, immigration, housing) housing)

There is little known about this populationThere is little known about this population

ObjectivesObjectives

1.1. To shed light on unmet needs of Somali To shed light on unmet needs of Somali families living with Autism,families living with Autism,

2.2. To highlight the concerns of parents To highlight the concerns of parents and caregivers of Somali children with and caregivers of Somali children with Autism, andAutism, and

3.3. To identify the potential barriers to To identify the potential barriers to accessing services.accessing services.

Methods Methods Study Design:Study Design:

Focus Groups:Focus Groups: One child care professionals N=6One child care professionals N=6 One mixed parent group N=4One mixed parent group N=4

Personal InterviewsPersonal Interviews Only parents were interviewed N=5Only parents were interviewed N=5

MethodsMethodsInclusion CriteriaInclusion Criteria: : Somali parents of a child with Somali parents of a child with

Autism (must have physical custody)Autism (must have physical custody) Daycare professionals caring for Daycare professionals caring for

Somali children. (Must spend a Somali children. (Must spend a minimum of 12 hours per week with minimum of 12 hours per week with children)children)

Must reside in the metro area.Must reside in the metro area.

Needs AssessmentNeeds Assessment

Interviews and focus group questions Interviews and focus group questions covered the following themes:covered the following themes:

Definition of AutismDefinition of Autism Beliefs regarding the causes of AutismBeliefs regarding the causes of Autism Community attitude towards special Community attitude towards special

educationeducation Sources of informationSources of information Unmet needs of familiesUnmet needs of families

Findings and Data Findings and Data AnalysisAnalysis

Analysis: Analysis: Five themesFive themes were were generated:generated:

1.1. Beliefs about Autism and Mental Beliefs about Autism and Mental HealthHealth

2.2. Services Services 3.3. Family and Community Impact Family and Community Impact 4.4. Mental Health Needs of ParentsMental Health Needs of Parents5.5. Recommendations and training Recommendations and training

RequestRequest

Beliefs Regarding the Beliefs Regarding the Causes of AutismCauses of Autism

Autism was described by participants as Autism was described by participants as follows:follows:

‘‘it is An American disease. We never saw it in Somalia; it is An American disease. We never saw it in Somalia; believe me when I say, and if children like ours were in believe me when I say, and if children like ours were in the neighborhood, we would have known. You cannot the neighborhood, we would have known. You cannot hide Autism, especially if there were so many like here hide Autism, especially if there were so many like here in Minnesota.’ (Father, 4 year old son)in Minnesota.’ (Father, 4 year old son)

I learned that vaccines have mercury, and that affects I learned that vaccines have mercury, and that affects the brain causing Autism. My child was a normal child the brain causing Autism. My child was a normal child until he received the vaccinations. 2-3 months after until he received the vaccinations. 2-3 months after that he was no longer the same. (Father, 8 year old son)that he was no longer the same. (Father, 8 year old son)

Beliefs Regarding the Beliefs Regarding the Causes of AutismCauses of Autism

There is a stigma surrounding mental There is a stigma surrounding mental illness as well as lack of knowledge illness as well as lack of knowledge regarding early intervention systems and regarding early intervention systems and special educationspecial education

‘‘The The Somali community does not know what Somali community does not know what special education is. They think it is for crazy special education is. They think it is for crazy people or mentally challenged persons. people or mentally challenged persons. Basically it is shameful to use special education. Basically it is shameful to use special education. If you take your child it is admitting your child is If you take your child it is admitting your child is not normal.’ (Mother, 4 year old Son)not normal.’ (Mother, 4 year old Son)

Services Services Limited Access to Medical Diagnosis and Limited Access to Medical Diagnosis and

Services,Services,

Lack of resources that provide information or Lack of resources that provide information or services to assist with paperwork, services to assist with paperwork,

Lack of accurate information about autism in the Lack of accurate information about autism in the Somali community,Somali community,

Limited availability of trained Somali PCAs and Limited availability of trained Somali PCAs and cultural barriers in using non-Somali PCAs, cultural barriers in using non-Somali PCAs, designated service hours not enough to meet designated service hours not enough to meet family needs.family needs.

Services Services Waiver program in not available for familiesWaiver program in not available for families

Lack of adequate daycare services was Lack of adequate daycare services was reported as a primary source of stress for reported as a primary source of stress for all familiesall families

Child care professionals expressed a fear Child care professionals expressed a fear that they will lose business, if found serving that they will lose business, if found serving special needs childrenspecial needs children

Lack of appropriate housing was also Lack of appropriate housing was also reportedreported

QuotesQuotes

“ ““ “Daycare is a big problem. It is hard because no one wants Daycare is a big problem. It is hard because no one wants to care for children with special needs, and if they do accept to care for children with special needs, and if they do accept these children, the providers do not have the appropriate these children, the providers do not have the appropriate training.” Mother, 6 year old son)training.” Mother, 6 year old son)

- “We need daycare facilities. I have no help and I am human; - “We need daycare facilities. I have no help and I am human; I cannot take my child with me all the time to work or I cannot take my child with me all the time to work or grocery. No daycare will care for my child.” (Mother, 4 year grocery. No daycare will care for my child.” (Mother, 4 year old son)old son)

- “If I have one child with Autism or special needs, the other - “If I have one child with Autism or special needs, the other parents will not bring their children because they fear an parents will not bring their children because they fear an Autistic child might harm their infant or younger child.” Autistic child might harm their infant or younger child.” (Daycare provider, 11 years of experience)(Daycare provider, 11 years of experience)

The Process

Identification Referral

Screening

Follow-AlongEvaluationEligibility

Individual Plan Services

Don’t qualify

QuotesQuotesI was left stranded and standing alone. I waited 4 months for the specialist I was left stranded and standing alone. I waited 4 months for the specialist appointment. They sent me too much paper work that took me weeks and appointment. They sent me too much paper work that took me weeks and weeks to complete myself. Others had to help me with the paper work. weeks to complete myself. Others had to help me with the paper work. Before Before the paper work, I waited and struggled to get a diagnosis. The long the paper work, I waited and struggled to get a diagnosis. The long waiting waiting period to see the specialist was unbearable. I had no directives from my period to see the specialist was unbearable. I had no directives from my doctor doctor or school to care for my child. It was frustrating,...[Pause]….. when I finally or school to care for my child. It was frustrating,...[Pause]….. when I finally saw saw the specialist, he only spent 15 minutes with me and told me the same the specialist, he only spent 15 minutes with me and told me the same things I things I already knew. I was upset with the ‘waste of time.’ I felt alone and already knew. I was upset with the ‘waste of time.’ I felt alone and confused confused and and thought the system to have shut me downthought the system to have shut me down. . How was I supposed to fight How was I supposed to fight Autism, I Autism, I was busy fighting the system’s many obstacles. was busy fighting the system’s many obstacles. It is heart breaking for us It is heart breaking for us parents. There are many health care professionals with many differing parents. There are many health care professionals with many differing opinions opinions about one disease. (Mother, 4 year old son)about one disease. (Mother, 4 year old son)

Services: HousingServices: Housing

““I was evicted from two apartments because my I was evicted from two apartments because my child was noisy. This made me very upset because child was noisy. This made me very upset because my son was not doing it on purpose. Now, I find it my son was not doing it on purpose. Now, I find it hard to find a place to rent. The social worker and hard to find a place to rent. The social worker and doctors are helping me now and we will be okay.” doctors are helping me now and we will be okay.” (Mother, 6 year old son)(Mother, 6 year old son)

““They knocked on my door, called the police, and They knocked on my door, called the police, and gave me warnings because my child [is] very active gave me warnings because my child [is] very active at night time.” (Mother, 4 years old)at night time.” (Mother, 4 years old)

Family and Community Family and Community ImpactImpact

Trust in healthcare providers is Trust in healthcare providers is undermined in this processundermined in this process

Families are struggling financiallyFamilies are struggling financially Families isolate themselves in order to Families isolate themselves in order to

avoid stigmaavoid stigma Increased concern over the limited Increased concern over the limited

attention paid to non-ASD siblingsattention paid to non-ASD siblings Fear of losing children to the government Fear of losing children to the government

was common was common

Cont’d …Cont’d …

Cited lack of support from extended Cited lack of support from extended familyfamily

Refugee experienceRefugee experience In spite of these difficulties, parents In spite of these difficulties, parents

are resilient and have cited are resilient and have cited spirituality as a source of comfortspirituality as a source of comfort

Mental Health Needs of Mental Health Needs of ParentsParents

Parents described their lives as being Parents described their lives as being stressful stressful

Parents reported isolation, anxiety and Parents reported isolation, anxiety and fear due to Autismfear due to Autism

Many parents have PSTD, due to the Many parents have PSTD, due to the refugee experiencerefugee experience

Daycare professionals reported parents Daycare professionals reported parents are difficult to deal with because they are difficult to deal with because they are overwhelmedare overwhelmed

Mental Health Needs of Mental Health Needs of ParentsParents

- - “You are isolated and you need emotional support. “You are isolated and you need emotional support. The Doctors need to be aware of how confused and The Doctors need to be aware of how confused and scared you are. It is hard to even understand how this scared you are. It is hard to even understand how this disease is all working.” (Mother, 4 year old son)disease is all working.” (Mother, 4 year old son)

- “My boys are getting too big for me to physically - “My boys are getting too big for me to physically handle [them]; I do not remember the last time my handle [them]; I do not remember the last time my husband and I got 10 minutes of continuous sleep. If husband and I got 10 minutes of continuous sleep. If one is sleeping through the night the other is awake one is sleeping through the night the other is awake and needs constant monitoring due to their violence. I and needs constant monitoring due to their violence. I can only say it is similar to having a new born at home can only say it is similar to having a new born at home for more than a decade.” (Mother, 16, 14 year old)for more than a decade.” (Mother, 16, 14 year old)

Sources of InformationSources of InformationParental sources of information:Parental sources of information: Media- news in particularMedia- news in particular Family and friendsFamily and friends CommunityCommunity Health care providersHealth care providers SchoolsSchools

Recommendations from Recommendations from ParticipantsParticipants

More communication from healthcare providers More communication from healthcare providers in a simpler and easy to understand formatin a simpler and easy to understand format

Assistance in navigating the system of care Assistance in navigating the system of care (roadmap)(roadmap)

More funding for special education programs More funding for special education programs and early intervention (ABA)and early intervention (ABA)

Appropriate training on special needs for Appropriate training on special needs for daycare and providers and parentsdaycare and providers and parents

Mandatory licensing and training for all Mandatory licensing and training for all daycare providers and PCAsdaycare providers and PCAs

Summary of Inequities Summary of Inequities Accessing health care Accessing health care Accessing county services, Accessing county services, Limited access to evidence based Limited access to evidence based

interventions that is data oriented (due to interventions that is data oriented (due to severity of ASD),severity of ASD),

Lack of knowledge of very complex Lack of knowledge of very complex systems of care with multiple players.systems of care with multiple players.

Lack of knowledge of developmental Lack of knowledge of developmental milestones and red flags of a new disorder. milestones and red flags of a new disorder.

Recommendations: Take Home Recommendations: Take Home PointsPoints

When Creating Programs & Systems When Creating Programs & Systems Consider:Consider:

AccessibilityAccessibility AvailabilityAvailability AffordabilityAffordability AcceptabilityAcceptability Awareness Awareness Accountability Accountability

Recommendations: Take Recommendations: Take Home PointsHome Points

When Concerns Arise Consider:When Concerns Arise Consider:

Observe, Listen and Dig Observe, Listen and Dig Deeper Deeper

Share Concerns with Families Share Concerns with Families in Culturally Competent Ways in Culturally Competent Ways

Remember Your Role and Remember Your Role and Know Your BiasKnow Your Bias

Remember System’s Remember System’s LimitationsLimitations

Recommendations: Take Recommendations: Take Home Points Home Points

Construct a coordinated system of care to minimize Construct a coordinated system of care to minimize confusion, optimize equitable access, promote confusion, optimize equitable access, promote efficiency and permit sharing ofefficiency and permit sharing of information among information among providers providers

Invest in competent professionals and use trained Invest in competent professionals and use trained interpreters that are knowledgeable about child interpreters that are knowledgeable about child development and diagnostic tools (confidentiality is development and diagnostic tools (confidentiality is a big issue) a big issue)

Develop strategies for partnerships, support systems Develop strategies for partnerships, support systems

and culturally appropriate communications and and culturally appropriate communications and education for parents and community members education for parents and community members about ASD and other developmental disorders about ASD and other developmental disorders (roadmap)(roadmap)

Recommendations: Take Recommendations: Take Home PointsHome Points

Next StepsNext Steps

More Research and collaborations More Research and collaborations

Funding is Critical Funding is Critical

Take ActionTake Action

Thank YouThank YouHuda FarahHuda Farah

hudafarah@healinstitute.hudafarah@healinstitute.orgorg