Colorado Substance Exposed Newborn Effort Name Change: Introducing SuPPoRT Colorado

Colorado Substance Exposed Newborn Effort Name Change: Introducing SuPPoRT Colorado

Our collaborative effort has a new name! Moving forward, the groups that were previously referred to as the Colorado Substance Exposed Newborns (SEN) Steering Committee, Family Advisory Board, and associated Work/Advisory Groups will be collectively known as Supporting Perinatal substance use Prevention, Recovery, and Treatment in Colorado (SuPPoRT Colorado). SuPPoRT Colorado will continue to work toward the same vision of a Colorado that equitably serves all families through prevention and reduction of substance use during pregnancy and provides multigenerational support for families to thrive, under a name that more accurately reflects our mission, values, and the work we do.

Aligning Our Name with Our Mission and Values

Hear from Family Advisory Board and Steering Committee members in their own words why they chose to make this name change:

The name change is important because it has a supportive person center description. I think it is important to keep the recovery from SUD during pregnancy in the title too so that it is also focused on the solution.”

Ashley Miller

Family Advisory Board member

“The new name, SuPPoRT Colorado: Supporting Perinatal substance use Prevention, Recovery, and Treatment in Colorado, is now inclusive of those who are affected by perinatal substance use throughout their entire lives. Effects of fetal alcohol exposure often require lifelong supports.”

Marilyn Fausset

Parent advocate, FASD Work Group Co-chair & Steering Committee member

“I really appreciate that the new name “SuPPoRT Colorado” shifts the focus from the newborn’s exposure to the support provided to both the newborn and the parent(s) related to prevention, treatment and recovery.”

Deborah Monaghan, MD, MSPH

Medical Director at Office of Children, Youth and Families-CDHS, Steering Committee member

“The name change reflects our commitment to learning with and from families, providers, researchers, and advocates. The new name better embraces our commitment to data-informed action that is family-led and community-based.”

Courtney L. Everson, PhD

Senior Researcher/Project Director at Colorado Evaluation and Action Lab, Data & Research Advisory Group Co-chair & Steering Committee member

“As our work has continued to evolve over the last 14 years, it only seems fitting that our language evolves too. Our new name “SuPPoRT Colorado” better reflects our continued commitment to families across the lifespan.”

Jade Woodard, MPA

Executive Director of Illuminate Colorado, founding Steering Committee Co-chair

“Rising to meet the current needs and opportunities in our state has been core to our collaborative work since the very beginning, and I’m looking forward to the impact we’ll have in this next phase as “SuPPoRT Colorado.”

Kathi Wells, MD, FAAP

Executive Director of the Kempe Center for the Prevention and Treatment of Child Abuse & Neglect, founding Steering Committee Co-chair

The Steering Committee was originally established in 2008 and is a subcommittee of the Colorado Substance Abuse Trend and Response Task Force. In 2019, the Family Advisory Board (FAB) to the Steering Committee was formed in order to elevate the voices of families who have experienced, directly or indirectly, the impacts of substance use during pregnancy. A reflection of the shared leadership of the Steering Committee and FAB, changing our initiative’s name to  SuPPoRT Colorado marks an exciting new chapter in our ongoing collaborative efforts to identify and implement strategies for reducing the number of families impacted by substance use during pregnancy and for improving outcomes for families across the lifespan.  

Beginning in April of 2021, the Steering Committee and FAB began a process to revisit our language and explore a name change to better align our name with our shared mission and values. Over the last year, the FAB and Steering Committee engaged in a process to identify ideas and ultimately choose our new name. Along the way, small ad-hoc groups of Steering Committee and Family Advisory Board members led the thinking with multiple opportunities for members across the effort to weigh in. We’re so grateful and excited to officially launch our new name and logo that was crafted with the input of so many dedicated partners.

Visit the SuPPoRT Colorado webpage to learn more about our history, vision, and mission,  click here to learn more about the current work, and sign up to join the effort here!

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Reflecting on a Year of Supporting Colorado Families Affected by Substance Use During Pregnancy

Reflecting on a Year of Supporting Colorado Families Affected by Substance Use During Pregnancy

What a 2021 we had in our collaborative efforts to move towards a Colorado that equitably serves all families through prevention and reduction of substance use during pregnancy and provides multigenerational support for families to thrive! We wish you rest and rejuvenation as the year draws to an end. 

Everyone who contributed to our work this year–whether as a work group co-chair, work group member, or another kind of project collaborator–brought their unique perspectives and commitment to supporting Colorado families. As many of our members shared in our recent member feedback survey, compared to going it alone, we are more effective in achieving our goals together.

About the Substance Exposed Newborns (SEN) Steering Committee

The Colorado Substance Exposed Newborns (SEN) Steering Committee was established in 2008 and is a subcommittee of the Colorado Substance Abuse Trend and Response Task Force.

The Colorado SEN Steering Committee is tasked with identifying and implementing strategies for reducing the number of families impacted by substance use during pregnancy and for improving outcomes for families across the lifespan.

The priorities, strategies and activities of the SEN Steering Committee are guided by family voice experiences and leadership. Strategic planning, activity engagement and impact are each data-informed.

Reflecting on Progress We’ve Made in 2021

With the calendar year coming to a close, we wanted to reflect on some of our shared achievements in 2021:

    • Family Advisory Board and Steering Committee jointly developed Opioid Settlement Fund recommendations, which were presented to the Attorney General and Colorado Substance Abuse Trend and Response Task Force. We also began to explore a name change to better reflect our vision and values. The Family Advisory Board is also recruiting new members!
    • Data and Research Advisory Group provided recommendations for the Colorado Perinatal Substance Use Data Linkage Project and launched the design of a perinatal substance use data snapshot and outcomes dashboard.
    • FASD Awareness Work Group published a list of Colorado Providers Equipped to Diagnose Under the Fetal Alcohol Spectrum Disorders Umbrella and conducted outreach to statewide organizations and networks of family-serving professionals in order to increase awareness of Fetal Alcohol Spectrum Disorder (FASD) and offer the list of providers as a resource to share with families.
    • Plans of Safe Care Work Group updated the Colorado Plan of Safe Care document to reflect the newest evidence-informed best practices.
    • Policy Analysis Work Group developed a working draft of best practice organizational policy guidance around toxicology testing.
    • Provider Education Work Group developed and hosted an educational series on trauma-informed communication and care.
    • Lastly, in 2021 we launched our webpage–including information about our priorities, a subscription form, and a public calendar. Finally having an online presence feels like a milestone!

What’s on the horizon?

We look forward to what’s to come in 2022, including hiring a strategic initiatives manager focused on behavioral health systems who will support our efforts, and choosing a new name for our collective work. Onwards!

About the Authors

Diane Smith is a mother of three, a parent partner with Denver Parent Advocates Lending Support (DPALS) and chair of the Family Advisory Board to the SEN Steering Committee.

Dr. Kathi Wells, is executive director of the Kempe Center for the Prevention and Treatment of Child Abuse and Neglect and co-chair of the SEN Steering Committee.

Jade Woodard is the executive director of Illuminate Colorado and co-chair of the SEN Steering Committee. 

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NEW Trauma-Informed Communication and Care Provider Education Series

NEW Trauma-Informed Communication and Care Provider Education Series

“We regularly hear from our colleagues that they recognize the importance of taking a trauma-informed approach to patient care, but very few have had the opportunity to receive formal training on trauma-informed care and communication,” said Dr. Laurie Halmo, pediatrician and toxicologist at Children’s Hospital Colorado and co-chair of the Colorado Substance Exposed Newborns Steering Committee work group focused on expanding healthcare provider education resources related to substance use and pregnancy with an emphasis on family leadership and addressing implicit bias. 

Designed by Healthcare Providers, for Healthcare Providers

Now, thanks to Colorado Substance Exposed Newborns Steering Committee Provider Education Work Group and the Colorado Perinatal Care Quality Collaborative, a NEW Trauma-Informed Communication and Care Provider Educational Series designed by healthcare providers, for healthcare providers, is available beginning next Monday. Each session grounded in the perspective of someone with lived experience related to substance use and pregnancy underscores just why this topic is so important.

Anyone who interacts with perinatal patients and their families in a clinical setting, from gynecologists, obstetricians, neonatologists, and pediatricians, to mental/behavioral healthcare providers and social workers, are encouraged to attend. Clinical professionals will walk away with the knowledge and tools to care for individuals in the perinatal period and those who are impacted by substance use in a trauma-informed way that leads to better experiences and outcomes for all. 

NEW Trauma-Informed Communication and Care Provider Education Series 

The educational series includes:

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an overview of the impact of trauma on women’s health, mental health, substance use, and experiences with obstetrical care

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effective trauma-related screening questions and practical provider and team approaches to improve communication and trauma-informed care in obstetrical settings

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practical tools for recognizing and reducing stigma and bias in interactions with patients

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practical tools for optimizing brief clinical interactions with individuals impacted by perinatal substance use in a trauma-informed, non-stigmatizing way, including motivational interviewing, attending skills, and the LEAP (Listen, Empathize, Agree, Partner) approach

Five Minutes With My Congressman

Five Minutes With My Congressman

Recently, I had a chance to talk with an aide from the 4th district represented by Congressman Ken Buck about the FASD Respect Act (H.R. 4151 and S.2238).  This piece of legislation could change my family’s life and potentially prevent hundreds of thousands of families from having to follow in our footsteps. 

With no more than five minutes to plead my case, I initially thought of giving the Congressman a snapshot of our family’s life and all the ways exposure to alcohol before birth  has negatively impacted our son, now diagnosed with Fetal Alcohol Spectrum Disorder (FASD). But, I decided this wasn’t the direction I wanted to go. It sounded too much like a list of complaints, and I didn’t want to sound like a whiner because my son is a loving, good-humored, kind-natured, individual full of potential and resilience. Instead, I made a convincing statement of truth that, I hope, left an indelible impression to help convince our Congressman to co-sponsor  the FASD Respect Act, authorizing $118 million for FASD prevention, screening, identification, research, and FASD-informed services by federal, state, local, tribal and private stakeholders.

I used my five minutes to explain what the FASD Respect Act would mean to our family, the multitudes of families who have loved ones diagnosed with FASD and the many, many people in this country that don’t even realize that FASD exists. As it stands, FASD is a national epidemic of catastrophic proportions. One that few seem to be aware of. This needs to change. It is estimated that up to 1 in 20 U.S. school aged children may have an FASD. It’s 100% preventable and caused when a fetus is exposed to alcohol before birth. You may not realize this, but alcohol is the leading cause of preventable brain injuries.   

We did not find out our son had FASD until he turned 14. That is an injustice to him, more than anyone. We should have known about this the day we brought him home, through foster care, but so many people were (and still are) completely unaware of what FASD is – including the medical field! This means even more people in the general public are unaware and families who have adopted children are particularly unaware. 

 

Remember, this is a SPECTRUM disorder.  That means FASD presents itself in various extremes.

 

PHOTO CREDIT: This photo was taken by the author’s son while they were on a walk together.

We adopted our son, who has FASD, when he was only a few months old.  Symptoms were not easy to detect at this age and he was meeting most of his developmental milestones.  What would have been helpful was knowing that his mother was drinking alcohol when he was in utero. This is another major issue with FASD.  What issue is that you may ask? Getting women to actually share that they drank while pregnant for fear of public ridicule.  We, as a society, must not hold judgment over women who have done this.  Rather, they should be supported in what to do next.  Don’t stigmatize another human being when there are many areas that each of us can grow in and learn from about others and ourselves.

Symptoms in our son really started showing up when he was a little bit older in his infancy, mostly in the form of sensory processing disorder.  He was hyper-sensitive to certain sounds, certain bodily feelings and certain textures and tastes that caused him to become extremely agitated.  He would have complete meltdowns if the wind was too strong.  Little did we know that these were the beginning signs of FASD.  

As he has gotten older he’s shown even more significant signs.  These symptoms have included problem-solving skills (specifically math), memory issues (doesn’t remember something I literally told him 10 minutes before), ability to remain attentive (Over the Hedge- Squirrel!), difficulty in maintaining friendships (he has difficulty associating with his peers), and understanding consequences (I’ve tried every reward/consequence strategy in the book, to no avail).  You might be thinking, “This is just how teenagers are!”  I assure you, this is only the tip of the iceberg.  Remember, this is a SPECTRUM disorder.  That means FASD presents itself in various extremes.  

Thankfully, information about FASD is becoming more readily available, but not nearly enough. The FASD Respect Act can rapidly accelerate the prevention and the education of the masses. If we had only known about our son’s FASD earlier we would have sought specific treatments recommended by professionals who knew what needed to be done once the diagnosis was made.  We informed our son’s pediatrician as well as others including the foster care system, various medical practitioners, therapists, psychologists, psychiatrists and school systems throughout the years about what we were experiencing.  Not one of them ever mentioned FASD as a cause. 

Still, it is the season of gratitude and I’m thankful that our son has his FASD diagnosis, and I’m thankful that I was heard by the Congressman’s office. I hear stories on shows like The FASD Success Show and read stories of adults who have come to this diagnosis later in life struggling to live independently, unable to hold down a job, or even getting into trouble with the law. These struggles later in life for families unaware of FASD in their lives will be so much more costly than not acting right now. The more we know the more we can act. The more we can act, the more we can bring about change. As much hurt, anger and sadness that FASD has caused our family, it has also brought out an absolute determination to bring about change; and given me an opportunity to connect with a “united front” of parents, adult survivors and organizations, like FASD United and the Colorado Chapter of FASD United – Illuminate Colorado, fighting for resources needed to increase education and prevention

We believe our son will continue to positively contribute to the world around him, but we also know he and every other individual with FASD can be much better represented and much better served if the FASD Respect Act is passed in the House and Senate.  

Our History Together

In 2017, the Colorado Chapter of NOFAS (now called FASD United) was among the four independent nonprofit organizations in Colorado that consolidated to leverage resources and increase capacity to more effectively prevent child maltreatment in Colorado. Since then, we’ve grown exponentially in service of our mission to strengthen families, organizations and communities to prevent child maltreatment.

LEARN MORE   

About the Author

This article was written by a father of  four beautiful children, three of whom have been adopted.  He is committed to sharing the experiences of his family impacted by FASD, anonymously, through the Becoming FASD Aware blog series to strengthen families and build awareness. 

Has your family been impacted by substance use during pregnancy?

Has your family been impacted by substance use during pregnancy?

If the answer to this question is yes, then there is an opportunity waiting for you to channel your experiences into change. Several spots on the Family Advisory Board are opening up in 2022. Your perspective is needed to build a Colorado that equitably serves all families through prevention and reduction of substance use during pregnancy and provides multigenerational support for families to thrive. That is the shared vision of the Colorado Substance Exposed Newborns (SEN) Steering Committee, established in 2008. This collaborative space is a subcommittee of the Colorado Substance Abuse Trend and Response Task Force tasked with identifying and implementing strategies for reducing the number of families impacted by substance use during pregnancy and for improving outcomes for families across the lifespan.

In 2019, the Family Advisory Board (FAB) to the Steering Committee was formed with the purpose of elevating the voices of families who have experienced, directly or indirectly, the impacts of substance use during pregnancy in order to

  • understand barriers in seeking support, health care, including treatment and other services, and
  • inform priority-setting within the Substance Exposed Newborns Steering Committee to raise awareness and best serve the needs of families impacted by substance use.

Anyone who has lived experience around substance use and pregnancy is encouraged to apply by completing the interest form to join this welcoming space to folks who identify as women, non-binary, and/or gender non-conforming. 

WANTED: Family Advisory Board Members

Take the first step by completing the Family Advisory Board Interest Form and we’ll be in touch soon!

A great example of how FAB members are making a difference is in the recently released Opioid Settlement Funds Recommendations jointly developed by Illuminate, the Colorado Substance Exposed Newborns Steering Committee and its Family Advisory Board. In the coming months and years, Colorado will also continue to receive funds from settlements and court rulings resulting from numerous lawsuits against drug companies, distributors and pharmacies over their role in the opioid crisis. It’s money that can — and should — be channeled to programs and services that equitably serve all families through prevention and reduction of substance use during pregnancy and provide multigenerational support for families to thrive.

This set of guidelines and recommendations for for State and local leaders set up a framework for dedicating opioid settlement funds to children and families impacted by perinatal substance use with a focus on building Colorado’s statewide capacity to:

  • align efforts,
  • apply lessons from data, and
  • recognize and respond to emerging needs.

The Steering Committee priorities, strategies and activities, like these recommendations, are guided by family voice experiences and leadership. Strategic planning, activity engagement and impact are each data-informed. The Steering Committee is convening, supporting and guiding the advancement of the four priority areas, with FAB members focusing in on the priority area of reducing stigma around accessing substance use disorder treatment and recovery supports for pregnant and parenting people.

Diane Smith, a mother of three who has a leadership role within this steering committee, as well as the Family Advisory Board, shared her insight in a recent article Family Voice Makes a Difference Illuminating Systemic Change.

“It is important to involve families with lived experiences as voice partners in program improvements and systemic change because it is the best way for our systems to evolve. When people are trying to identify what works, what doesn’t work, and how we change things for the next family, it is important for families to give input and share their experience,” said Smith.

Stepping into an advocacy role like this one can be hard for parents and caregivers and Smith pointed to a strong relationship with Hattie Landry, Illuminate strategic initiatives manager for making her experience a positive one. “It is important for FAB members to feel like they are vetted into the situation and feel comfortable with the group of individuals before they share their story. Hattie makes us feel comfortable, she shows a lot of empathy as a person and colleague,” said Smith. 

This is an amazing opportunity to serve in a role advising big changes and investment related to substance use and pregnancy by taking on the responsibilities of FAB members, including:

  • Encouraging greater understanding of the lived experience of individuals and families impacted by perinatal substance use.
  • Actively participating in establishing strong partnerships with Steering Committee members.
  • Discussing and evaluate practices, programs and services and provide recommendations that respond to the unique needs of families.
  • Channeling needs, concerns and recommendations to the Steering Committee for consideration.
  • Giving input based on your own experience, while recognizing that other members’ experiences may be different from your own.
  • Collaboratively working on projects identified by the FAB, including story-sharing planning and implementation.
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Member Roles & Responsiblities

Download the Family Advisory Board member roles and responsibilities

Join the Family Advisory Board

Take the first step by completing the Family Advisory Board Interest Form and we’ll be in touch this fall.

Connect with Us

Please reach out with questions about this or other opportunities to make a difference by sharing your lived experiences. It matters.

Tools of the Caseworker’s Trade: Using the Toxicology Resource Guide in the Field

Tools of the Caseworker’s Trade: Using the Toxicology Resource Guide in the Field

The Toxicology Resource Guide was designed as a resource to support caseworkers not only during trainings, but also in the field. It is imperative that child welfare caseworkers have the tools they need to meet the needs of the families they serve. Since substance use is such a prevalent factor in child maltreatment, a resource like the Toxicology Resource Guide can be a benefit not only for caseworkers but also for the caregivers and children with whom they interact.

Critical thinking is always . . . well, critical.

Toxicology tests are the primary monitoring tool for departmental workers seeking to support the sobriety of their clients, and it is not uncommon for a child welfare department to require a substance use evaluation, and subsequently, cessation from all substances in a treatment plan.

The toxicology test results, however, are often viewed through a binary lens–either positive or negative. Unfortunately, this leads workers, and sometimes even the individuals being tested, to use terms such as “clean” or “dirty” to describe the results. Describing test results as “dirty” clearly carries a negative connotation, and using this kind of language is antithetical to the strengths-based practices that Colorado Department of Human Services is committed to.  

Instead, caseworkers can use the information contained in the Toxicology Resource Guide to better understand the data that they receive from testing agencies and move beyond the oversimplified and potentially harmful descriptors of “clean” and “dirty”. The guide contains information about types of toxicology tests, neonatal testing and testing children and adults. It breaks down the signs of substance use and misuse by substance–but it also acknowledges that toxicology test results don’t give us the whole picture.

Using substances in and of itself is not necessarily a child welfare concern. This is why it’s so important for caseworkers to put their critical thinking skills to the test! For example, The Colorado Family Safety Assessment tool enables caseworkers to perform a complete assessment to see what’s working and what’s not in each unique household.

Another Tool in the Toolbox

Just like a drug test is just one piece of the puzzle, the Toxicology Resource Guide is just one tool in a caseworker’s toolbox–but it’s an important tool for understanding the needs of families who may be using substances. A specialized tool like the Toxicology Resource Guide can empower Colorado child welfare caseworkers to interpret drug test results knowledgably and thoughtfully and, as a result, can positively affect the caregivers and children they serve. 

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