The Village Project: Discovering Unmet Needs of Families of Kids With Disabilities (Part Two)

Dr. Gary Sweeten is a friend of Key Ministry and a passionate advocate within the church for families impacted by disabilities. Gary currently serves as Founder and Chairman of LifeWay Counseling Centers and is President of Sweeten Life Systems, a research, coaching, consulting and training organization for professional and peer caring. Sweeten Life received a $300,000 research grant from the Hatton Foundation to identify the most critical needs of families of children with special needs. Today, Gary discusses some of the preliminary findings of their research.

We were shocked & surprised by a few key items:

While we gained many new insights about the research topic, and know that these insights will help others in addition to Sweeten Life create good solutions, here are a few big surprises to us:

First, they told us “no one has ever asked us questions about our needs in the past.”  This is shocking!  Does it mean that none of the outside caregivers listened to them but only did what they what they saw as important?

Second, every family wanted to share what they had learned – their ‘Best Stuff’ – with other families to help them out.  Wow!  They weren’t ‘takers’, they wanted to be ‘givers.’  And,

Third, their isolation from society takes them out of the mainstream of most community services.  They become a hidden culture.

Other key insights

Nobody knows a child with special needs better than the parents. They are the real experts and anyone who wants to help the IP must listen carefully to the family members and take their views into treatment considerations.

Most of the families have discovered things that work for them and will work for others. However, there is no current way to share these Best Practices.

The additional relational, emotional, physical, financial and spiritual stress on parent with a child or adult who has a major disability is overwhelming and far too often leads to marital fractures.

Parents told us they need practical, easily supplied assistance from friends. They want spiritual support and encouragement, prayer and wisdom now more than ever. They need folks to help with home repairs, food, lawn care, painting and ironing.  Things that friends and family do for those they love and churches can provide rather easily. However, unlike groups such as Habitat for Humanity, there are no widely available support systems set up to coach/support the families and reduce their stress.

These parents want and need friends from their churches and community to listen with love and respect; pray with faith, hope and positive expectation; serve with practical works of mercy at their homes on a regular basis; This will require Lay or Peer Helpers to be trained as one very important part of their total care.

My work for the past forty years shows that ordinary people with little of no professional training in medicine or psychology can be equipped with the skills proven by numerous research studies to foster health and healing in needy individuals and families.

Adoption and foster care is also important and requires that the “parents” get even more training in the skills of helping than biological parents.

What did the families learn from their participation in The Village’ research process?

During our final face-to-face, at-home mom & dad interviews we asked them to share any significant impact the year-long, monthly research process ITSELF might have made on the quality of their family’s lives.  These positive results are what they told us they felt.  The family-centered, non-judgmental relationships established during the research led to these statements.

Making an empathic connection meant we were authentic, not superficial.”I found that you are sincerely interested in our situation, beyond the requirements of the study.  You wanted to know us as real people.  And that was important to me.  There are studies where the researchers try to disconnect.  There was always a personal relationship.  It helps us open up and feel comfortable in our conversations.”

Being with the entire family in their home got our team close to their reality. “You can only gain an understanding when you live with a child 24/7.  It is hard for anyone to have a grasp if what it is like to have a fear of the future.  After nine years it has become a chronic wearing problem; food issues, behavior, school staff meetings, medication, will there be new problems as he gets older?

Commitment to a monthly process, setting aside time to learn and focused introduced reflection and planning that was very useful. “It forced us to sit and do some self-reflection and talk about what we do think about the different areas.  It taught us we have something to give – our experiences could be beneficial for others. We have these things that we never sit and think about or express, and once we express them they really change us.” “This study caused me to think about what I can delegate, what can I get help with, what don’t I need to control, what I can let go to others.”

New family-chosen solutions: “This study caused me to think about what I can delegate, what can I get help with, what don’t I need to control, what I can let go to others.”

Affirmation, caring & celebration: “An affirmation that we are doing a good job with our kids.  I think your caring about us made you better researchers.  You made it personal and relational.  It wasn’t clinical.”

Gary’s team will be presenting the findings of the research this Saturday at The Village Family Fall Gathering/Conference at Christ Church in Mason, OH.

Gary blogs at www.sweetenlife.com and http://garysweetenblogspotcom.blogspot.com/.


About Dr. G

Dr. Stephen Grcevich serves as President and Founder of Key Ministry, a non-profit organization providing free training, consultation, resources and support to help churches serve families of children with disabilities. Dr. Grcevich is a graduate of Northeastern Ohio Medical University (NEOMED), trained in General Psychiatry at the Cleveland Clinic Foundation and in Child and Adolescent Psychiatry at University Hospitals of Cleveland/Case Western Reserve University. He is a faculty member in Child and Adolescent Psychiatry at two medical schools, leads a group practice in suburban Cleveland (Family Center by the Falls), and continues to be involved in research evaluating the safety and effectiveness of medications prescribed to children for ADHD, anxiety and depression. He is a past recipient of the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). Dr. Grcevich was recently recognized by Sharecare as one of the top ten online influencers in children’s mental health. His blog for Key Ministry, www.church4everychild.org was ranked fourth among the top 100 children's ministry blogs in 2015 by Ministry to Children.
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