Improving the Quality of Health
Care Delivery for Children With
Special Health Needs
A Qualitative Needs Assessment for
Somali Families With Autistic
Children
Huda Farah, MS

A needs assessment of Somali families of
Children with autism was conducted by Deka
Ahmed and Huda Farah in 2009 in Minneapolis
Minnesota, under the umbrella of HEAL
Institute.

Conducted among parents of children with
autism and daycare professionals who serve the
Somali community.
Background
Somalis in Minnesota
from 1993 - 2010



Demographics
Socioeconomic and
Education status
Refugee Experience
History of Autism in The Somalis
Community of Minnesota

2006 noticed increase number of Somali children with
developmental delays

2007 “HIIL NAAFO” for CICC

2008 Presentation for Refugee task force, WCCO report, Somali
ASD initiative, Community Forum

2009 MDH report, and issues with data collection
http://www.health.state.mn.us/ommh/projects/autism/report09
0331.pdf

Professionals Forum & needs assessment research, other research
attempts (vitamin D )
Why This Study?




According to CDC autism is an urgent public
health concern
For Somalis this is a new disease, for the first
generation, most of the children are on the
severe end of the spectrum, and most families
have multiple children with ASD
Families are facing multiple barriers (systems,
cultural, language, immigration, housing)
There is little known about this population
Objectives
1.
To shed light on unmet needs of Somali
families living with Autism,
2.
To highlight the concerns of parents and
caregivers of Somali children with Autism, and
3.
To identify the potential barriers to accessing
services.
Methods

Study Design:

Focus Groups:
One child care professionals N=6
 One mixed parent group N=4


Personal Interviews

Only parents were interviewed N=5
Methods
Inclusion Criteria:
 Somali parents of a child with Autism (must
have physical custody)
 Daycare professionals caring for Somali
children. (Must spend a minimum of 12 hours
per week with children)
 Must reside in the metro area.
Needs Assessment
Interviews and focus group questions covered the
following themes:
 Definition of Autism
 Beliefs regarding the causes of Autism
 Community attitude towards special education
 Sources of information
 Unmet needs of families
Findings and Data Analysis

Analysis: Five themes were generated:
1.
2.
3.
4.
5.
Beliefs about Autism and Mental Health
Services
Family and Community Impact
Mental Health Needs of Parents
Recommendations and training Request
Beliefs Regarding the Causes of
Autism
Autism was described by participants as follows:

‘it is An American disease. We never saw it in Somalia; believe me when I
say, and if children like ours were in the neighborhood, we would have
known. You cannot hide Autism, especially if there were so many like here
in Minnesota.’ (Father, 4 year old son)

I learned that vaccines have mercury, and that affects the brain causing
Autism. My child was a normal child until he received the vaccinations. 2-3
months after that he was no longer the same. (Father, 8 year old son)
Beliefs Regarding the Causes of
Autism

There is a stigma surrounding mental illness as
well as lack of knowledge regarding early
intervention systems and special education
‘The Somali community does not know what special education
is. They think it is for crazy people or mentally challenged
persons. Basically it is shameful to use special education. If
you take your child it is admitting your child is not normal.’
(Mother, 4 year old Son)
Services

Limited Access to Medical Diagnosis and Services,

Lack of resources that provide information or services to
assist with paperwork,

Lack of accurate information about autism in the Somali
community,

Limited availability of trained Somali PCAs and cultural
barriers in using non-Somali PCAs, designated service
hours not enough to meet family needs.
Services

Waiver program in not available for families

Lack of adequate daycare services was reported
as a primary source of stress for all families

Child care professionals expressed a fear that
they will lose business, if found serving special
needs children

Lack of appropriate housing was also reported
Quotes
“ “Daycare is a big problem. It is hard because no one wants to care for
children with special needs, and if they do accept these children, the providers
do not have the appropriate training.” Mother, 6 year old son)
- “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 grocery. No daycare will care for
my child.” (Mother, 4 year old son)
- “If I have one child with Autism or special needs, the other parents will
not bring their children because they fear an Autistic child might harm their
infant or younger child.” (Daycare provider, 11 years of experience)
The Process
Don’t qualify
Identification
Referral
Screening
Eligibility
Individual Plan
Evaluation
Follow-Along
Services
Quotes
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
weeks to complete myself. Others had to help me with the paper work. Before
the paper work, I waited and struggled to get a diagnosis. The long waiting
period to see the specialist was unbearable. I had no directives from my doctor
or school to care for my child. It was frustrating,...[Pause]….. when I finally saw
the specialist, he only spent 15 minutes with me and told me the same things I
already knew. I was upset with the ‘waste of time.’ I felt alone and confused
and thought the system to have shut me down. How was I supposed to fight Autism, I
was busy fighting the system’s many obstacles. It is heart breaking for us
parents. There are many health care professionals with many differing opinions
about one disease. (Mother, 4 year old son)
Services: Housing
“I was evicted from two apartments because my child was noisy. This
made me very upset because my son was not doing it on purpose. Now,
I find it hard to find a place to rent. The social worker and doctors are
helping me now and we will be okay.” (Mother, 6 year old son)
“They knocked on my door, called the police, and gave me warnings
because my child [is] very active at night time.” (Mother, 4 years old)
Family and Community Impact





Trust in healthcare providers is undermined in this
process
Families are struggling financially
Families isolate themselves in order to avoid stigma
Increased concern over the limited attention paid
to non-ASD siblings
Fear of losing children to the government was
common
Cont’d …



Cited lack of support from extended family
Refugee experience
In spite of these difficulties, parents are resilient
and have cited spirituality as a source of comfort
Mental Health Needs of Parents




Parents described their lives as being stressful
Parents reported isolation, anxiety and fear due
to Autism
Many parents have PSTD, due to the refugee
experience
Daycare professionals reported parents are
difficult to deal with because they are
overwhelmed
Mental Health Needs of Parents
- “You are isolated and you need emotional support. The Doctors need to be
aware of how confused and scared you are. It is hard to even understand
how this disease is all working.” (Mother, 4 year old son)
- “My boys are getting too big for me to physically handle [them]; I do not
remember the last time my husband and I got 10 minutes of continuous
sleep. If one is sleeping through the night the other is awake and needs
constant monitoring due to their violence. I can only say it is similar to
having a new born at home for more than a decade.” (Mother, 16, 14 year
old)
Sources of Information
Parental sources of information:
 Media- news in particular
 Family and friends
 Community
 Health care providers
 Schools
Recommendations from Participants

More communication from healthcare providers in a
simpler and easy to understand format

Assistance in navigating the system of care (roadmap)

More funding for special education programs and early
intervention (ABA)

Appropriate training on special needs for daycare and
providers and parents

Mandatory licensing and training for all daycare
providers and PCAs
Summary of Inequities





Accessing health care
Accessing county services,
Limited access to evidence based interventions
that is data oriented (due to severity of ASD),
Lack of knowledge of very complex systems of
care with multiple players.
Lack of knowledge of developmental
milestones and red flags of a new disorder.
Recommendations: Take Home Points
When Creating Programs & Systems Consider:






Accessibility
Availability
Affordability
Acceptability
Awareness
Accountability
Recommendations: Take Home Points
When Concerns Arise Consider:

Observe, Listen and Dig Deeper

Share Concerns with Families in
Culturally Competent Ways

Remember Your Role and Know
Your Bias
Remember System’s Limitations

Recommendations: Take Home Points

Construct a coordinated system of care to minimize
confusion, optimize equitable access, promote efficiency and
permit sharing of information among providers

Invest in competent professionals and use trained
interpreters that are knowledgeable about child development
and diagnostic tools (confidentiality is a big issue)

Develop strategies for partnerships, support systems and
culturally appropriate communications and education for
parents and community members about ASD and other
developmental disorders (roadmap)
Recommendations: Take Home Points
Next Steps

More Research and collaborations

Funding is Critical

Take Action
Thank You
Huda Farah
hudafarah@healinstitute.org