It’s About Respect: Building the Foundation for Change this FASD Awareness Month

It’s About Respect: Building the Foundation for Change this FASD Awareness Month

September is Fetal Alcohol Spectrum Disorder (FASD) Awareness Month. As the Colorado affiliate of the National Organization on Fetal Alcohol Syndrome (NOFAS), our organization is raising awareness all month long to help more professionals, parents and caregivers identify FASD and build Colorado’s statewide capacity to support impacted families. To that end, we need to shine a light on the opportunity before Congress to support the FASD Respect Act right now. 

The federal bipartisan, bicameral Advancing FASD Research, Services, and Prevention Act (S. 2238 and H.R. 4151), known as the FASD Respect Act, introduced this year would authorize $118 million for FASD prevention, screening, identification, research, and FASD-informed services by federal, state, local, tribal and private stakeholders.

Most importantly, the bill would create a structure for the development of well-informed public policy on FASD and would provide a clear, ongoing societal commitment to advancing research and ensuring essential services for persons with FASD and their caregivers.

FASD is a term used to describe a range of effects that can occur in a person exposed to alcohol before birth. Recent research estimates that up to 1 in 20 school-aged children in the United States may have an FASD.

People living with an FASD can reach 100% of their potential with early interventions and support from the community. Identification of an FASD—along with appropriate supports and services—can prevent secondary impacts like dropping out of school, getting into trouble with the law and alcohol and substance use. As Marilyn, a mother committed to sharing the experiences of her family impacted by FASD through story-telling emphasized the importance of a diagnosis in her most recent Becoming FASD Aware blog, “an evaluation from an FASD-aware neuropsychologist and the resulting report, with a fetal alcohol syndrome (FAS) diagnosis, helped me explain my son’s behaviors—like can’t vs. won’t. . . I now understand his behaviors in an informed light.” 

However, alarming gaps in FASD-related diagnostic and clinical resources are common throughout the United States. In addition, though many states and local communities have programs and policies to help support FASD prevention, FASD-informed intervention practices and services are limited in most systems of care around the country, and the United States itself lacks a national agenda to unite government efforts towards a common goal. 

Learn More About Alcohol & Pregnancy

Alcohol is the leading cause of preventable brain injury. No amount of alcohol is safe during pregnancy.

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Find Support

  • Need a list of Colorado Providers knowledgeable about Fetal Alcohol Spectrum Disorders and able to diagnose?

  • Want to connect with other parents and caregivers impacted by FASD?

  • Can’t find local services or a determination of eligibility?

The FASD Respect Act lays the foundation to construct a national agenda to enhance:

    • Programs and Funding for FASD Research
    • Prevention, Screening and Identification Efforts
    • FASD-Informed Services

Key Provisions of the FASD Respect Act

The bill’s key provisions would:

    • reauthorize and strengthen existing federal FASD programs, including the Interagency Coordinating Committee on FASD; 
    • replace the defunct National FAS Taskforce with a National Advisory Council on FASD; 
    • establish new FASD programs on Building State and Tribal FASD Systems, Community Partnerships, Best Practices and Models of Care, Transitional Services and Demonstration FASD-informed Services for Individuals with FASD; 
    • provide funding to the Departments of Education and Justice for FASD education awareness and training; and, 
    • establish a FASD Center of Excellence as the go-to entity for State, Tribal and local governments and non-governmental stakeholders seeking to develop new or improve existing best practices for FASD prevention, screening and identification, diagnosis and FASD-informed intervention programs and services.

Together, we can ensure Colorado is equipped to support families impacted by FASD and prevent even more Coloradans from being impacted in the future. This FASD Awareness Month, join us in advocating for the passage of the FASD Respect Act to help develop the infrastructure to support Colorado families for years to come.

Participate in a virtual meeting with your member of the U.S. House of Representatives.

Congressional Representatives want to hear from you about why particular subjects/pieces of legislation are important to you. Individuals with lived and/or professional experience related to FASD are uniquely positioned to help their representatives learn about FASD and how the FASD Respect Act would improve the lives of impacted families in Colorado.

We are here to help! Illuminate Colorado and NOFAS are here to support you. If you would like to participate in a meeting with your representative, reach out to Cassie Davis and let us know who your representative is, and we will provide you with everything you need to schedule and host a meeting. 

Not sure who your representative is? Find out here.

**We are particularly in need of constituents of District 1 (Representative Diana DeGette), District 3 (Representative Lauren Boebert), District 6 (Representative Jason Crow), and District 7 (Representative Ed Perlmutter) to schedule and participate in meetings.**

    Ask an organization to sign on to the letter of support for the FASD Respect Act.

    Whether its an organization you work for or are involved with, or a business, agency, non-profit or other organization that would support or benefit from the passage of The FASD Respect Act, ask them to sign this letter of support.

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      Family Voice Makes a Difference Illuminating Systemic Change

      Family Voice Makes a Difference Illuminating Systemic Change

      Families are experts on their children and by extension the programs intended to support them in strengthening their families and addressing challenges. It is for this reason that Illuminate Colorado looks to parents and caregivers with lived experiences as the driving force within coalitions and networks focused on systemic change. We connected with three Coloradans giving voice to their experiences through two collective spaces “walking the walk” so to speak when it comes to the family voice movement to get their reflections on the impact Illuminate is having in the field.  

      Increasingly, there is an effort to involve parents and caregivers from all walks of life in the decision-making process of systemic change, as well as program improvement. “Nothing for us without us! It is important that we listen and honor lived experience. We need to uplift and celebrate lived experience by saving them a seat at the table,” said Heather Hicks, a mother of two and a family voice representative for the Colorado Partnership for Thriving Families. “The Partnership”, as it’s more commonly known, is a collaborative space aiming to create conditions where children and the adults in their lives can thrive. The Partnership is building collaboration at the state and local level to align funding, priorities, regulations, outcome measures and implementation – across sectors and jurisdictions to create a strong family well-being system that supports families. As the backbone support team for the Partnership, Illuminate is guiding vision and strategy, supporting aligned activities, establishing shared measurement practices, cultivating community engagement and mobilizing resources in support of this collective effort. 

      “I have worked in various spaces similar to the Colorado Partnership for Thriving Families. I have been the parent that professionals have refused to listen to. I have been that parent that professionals look in the face and nod their heads then do nothing. I have been the parent that has continued to cry out and strive for equitable spaces for families so that they come and participate in the decisions that are being made for them. I have been the parent that has spent years fighting for change and has seen very little transpire from it. So to come from that and walk into a space where Illuminate has opened their arms and hearts to not only hear what we have to say, but to boldly act upon what we have to say – it is a beautiful thing,” said Hicks. 

      Hicks and Fikile Ryder, another mother of two engaged as a Partnership family voice representative, have been involved in this collaborative space for more than a year now. They both co-founded the Partnership Family & Caregiver Space and serve on the leadership team for the Partnership. “Illuminate is an unsung leader in the equity charge for lived experience. What makes them special is that they lead with compassion and heart. As an organization, they have unconditionally supported our asks and needs,” shared Ryder.

      When the two women spoke to the Partnership leadership team about fair compensation for families and lived experience working with the Partnership, they said it was an extremely awkward and difficult conversation to have. As women, they felt the social constraints against them that make it even more difficult to advocate and ask for compensation for their time and talent. Reaching out to Illuminate to talk about how they were feeling was a moment the women recognized as the moment “the tables turned a little bit and they felt like equals who were being valued and heard”, crediting Illuminate for acting quickly to strive towards a solution. “We were met with support, kindness, advocacy, ideas, kind words and overall love. This was a turning point for the Family and Caregiver Space,” said Ryder.  

      From that moment on efforts were made to demonstrate a real commitment to equity within the Partnership by compensating family voice representatives for their time away from their personal and professional lives, increasing pay for family voice partners to $50 per hour. And while Illuminate is heartened to hear that the process of getting to this milestone in family voice compensation felt positive and swift, Illuminate is also quick to credit philanthropic support and a shared desire among all of the Partnership Leadership Team for this additional investment. It is unique among the collective spaces that Illuminate supports right now, however, honoring the lived experiences of families is not. The Colorado Substance Exposed Newborns Steering Committee was 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.

      Diane Smith is a mother of three who has a leadership role within this steering committee, as well as the Family Advisory Board. “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.   

      The FAB has been instrumental to the understanding of barriers in seeking support, health care, including treatment and other services, and informing of priority-setting within the steering committee to raise awareness and best serve the needs of families impacted by substance use. Stepping into an advocacy role like this one can be hard for parents and caregivers and Smith points 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. When asked what decision-makers can do to support family voice partners and what non family-voice partners can do to create spaces where everyone feels valued and heard, Smith reminds organizers to be flexible and meet families where they are at by communicating by phone, email, text or even in person to ease the stress of sharing their story. 

      Five Things We've Learned from Collaborating with Family Partners

      Illuminate’s work within the Spectrum of Prevention fostering coalitions and networks to ensure continued progress on policy priorities, identify opportunities to protect existing policies that are serving families and enhance policy implementation has expanded over the last several years. The organization now supports eight different collaborative spaces to advance child maltreatment prevention in Colorado, with Landry facilitating discussions with family voice partners across many of these spaces. She gives five quick tips for organizations and collaborative spaces based on what we’ve learned from collaborating with family partners: 

      1. Ask family voice partners what their goals & visions are for systems-level projects.
      2. Involve family voice partners from the very start of projects.
      3. Don’t make assumptions about what families need. Ask questions, listen, learn, adapt, and grow.
      4. Provide equitable compensation to family voice partners for their time and expertise.
      5. Support family voice partners and non family-voice partners to create spaces where everyone is and feels valued and heard, creating equitable decision-making processes. 
      Additional Counties Needed to Expand Peer Support Groups for Families Impacted by Substance Use

      Additional Counties Needed to Expand Peer Support Groups for Families Impacted by Substance Use

      In 2019, Colorado was awarded a Regional Partnership Grant by the Children’s Bureau aimed at improving the well-being, permanency and safety outcomes of children and the recovery outcomes for parents whose children are in or at risk of out-of-home placement associated with a parent or caregiver’s substance use. Since that time Colorado partners have been collaborating through this opportunity to build protective factors within families by expanding Circle of Parents® in Colorado. The intended result of this Circle of Parents Expansion project (COPE) is to move this national evidence-informed model to an evidence-based model eligible for federal reimbursement through IV-E Clearinghouse for the Family First Prevention Services Act. 

      COPE partners are looking for six additional counties to pilot the COPE Project in their communities. Interested counties would be required to engage with their Best Practice Court Teams to launch the project and to begin implementing the DANSR approach and to participate in the grant-mandated evaluation. This is a grant-funded expansion, so there is no cost to participate. 

      Circle of Parents groups provide a friendly, supportive environment led by parents and other caregivers. Groups come together based on their location and shared experiences, like parenting while in recovery from a substance use disorder, to openly discuss the successes and challenges of raising children, free from judgment. Illuminate Colorado, a statewide nonprofit working to strengthen families, organizations and communities to prevent child maltreatment, has been focused on growing Circle of Parents® in Colorado for the last several years as the Colorado Chapter for this national evidence informed model. Illuminate Colorado offers training, ongoing support and promotion to the 43 Circle groups meeting mostly online right now and plans to grow to nearly 60 Circle groups throughout Colorado by the end of 2021, many of which will be involved in COPE. 

      Local courts and county-level departments of human services, the Colorado State Court Administrator’s Office, the Office of the Respondent Parents’ Counsel, the CDHS Division of Child Welfare and Office of Behavioral Health and Illuminate Colorado are collaborating through COPE to encourage and support the incorporation of peer support groups into the innovative Dependency and Neglect System Reform (DANSR) approach that is already successfully utilized across various Colorado counties to better manage cases with substance use concerns. While this project is currently focused on courts and communities who implement or are interested in applying the DANSR approach, however this may change and expand to other communities in the future. 

      According to the 2015 National Survey on Drug Use and Health, about 1 out of every 8 children in the U.S. lives with at least one parent dependent on alcohol or in need of treatment for substance use disorder. According to 2014-2018 Trails data from the Colorado Department of Human Services (CDHS), 13,325 children in Colorado were removed from their homes due to parental drug and/or alcohol abuse. Parents with a social network of emotionally supportive friends, family and neighbors often find that it is easier to care for their children and themselves. Research has shown that parents who are isolated, with few social connections, are at higher risk for child maltreatment. When parents don’t feel like they are part of a community and, in turn, feel isolated and unsupported, it should be a concern for all those looking to prevent child maltreatment and address substance use. The well-documented solution to addressing both issues lies in building social connections.

      The COPE project is designed to identify and provide services for parents impacted by substance use issues by addressing systemic processes in the court system using the DANSR approach to managing cases and through the enhancement of the recovery ecosystem for parents using  Circle of Parents. The evaluation of COPE has been designed to minimize the time and resource requirements of participating counties and their staff. 2M Research and the Kempe Center serves as the evaluation team for the project to provide a true randomized control trial design.  

      To learn more about DANSR and the COPE Project, contact Megan Kearsley, CIP Coordinator and COPE Project Director, State Court Administrator’s Office at megan.kearsley@judicial.state.co.us. 

      Prioritizing Prevention in Colorado’s State Budget

      Prioritizing Prevention in Colorado’s State Budget

      Good news: Colorado is poised to prioritize prevention in our state budget. Released Monday, the budget package outlines how the Joint Budget Committee is proposing state resources be allocated for fiscal year 2021-2022, which begins July 1. The budget package was crafted over the last five months and includes the annual general appropriations bill (otherwise known as the “long bill”) and other JBC-sponsored bills related to the budget that are introduced with the long bill.

      What we’re excited about in the budget proposal:

      When families have information and access to resources to meet basic needs, we strengthen the foundation for families and communities to thrive. By prioritizing prevention–through key focus areas include home visiting, child care, family planning, family resource centers, and adult education–the state budget brings more resources within reach for Colorado families. These strategies build protective factors in all families to prevent child maltreatment before it occurs–including addressing systemic barriers to building protective factors across the population.  

      Continued funding for Family Resource Centers through the Family Support Services line item, including a 2.5% increase for community provider rates.

      Family Resource Centers play a critical role in Colorado communities, and through continued funding we can ensure they’re able to continue offering critical family services that build protective factors and prevent child maltreatment.

      The restoration of the Child Care Services and Substance Use Disorder Treatment Pilot Program line item, which was cut last year.

      Restoring this line item means we can ensure more families have real options when it comes to taking care of their behavioral health by making sure that lack of child care isn’t the reason that a pregnant or parenting person can’t access treatment.

      The restoration of the High Risk Pregnant Women Program line item (which funds the Special Connections program) in the CDHS budget.

      Restoring this line item ensures that specialized treatment providers can continue to serve pregnant and parenting people and offer them options for tailored, family-focused support outside of the child welfare system.

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      What’s we’re still working on:

      Ensuring Colorado makes practical existing investments in child maltreatment prevention using the billions of dollars the state will be receiving from the 2021 American Rescue Plan.

       

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      Make Your Voice Heard

      To guide how Colorado invests the stimulus money, our state leaders need to hear from us. Submit written feedback HERE if you care about preventing child maltreatment. 

      Investing in prevention at the state level is among the many policy priorities on the Illuminating 2021 Policy Agenda which highlights policies that build one or more protective factors. As state legislators continue to work on the state budget, Illuminate is encouraging policymakers to continue prioritizing primary prevention strategies to ensure families have the foundations they need to thrive. 

       

      Review the 2021 Policy Agenda

      Download the 2021 Illuminating Policy Agenda.

      Use the Illuminate Colorado Bill Tracker to stay up to date on the progression of bills this session related to strengthening families.

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      Subscribe

      Stay up to date on policy that prevents child maltreatment and the 2021 Illuminating Policy Agenda by subscribing to Illuminate’s blog.

      Illuminate Partners with Head Start to Support Strength Based Conversations Related to Substance Use

      Illuminate Partners with Head Start to Support Strength Based Conversations Related to Substance Use

      Many families struggle, often in private, with substance use. But beginning a conversation around substance use with any family can often feel uncomfortable and awkward, even for professionals who work with children and families every day, like home visitors and early child care professionals. 

      When families can feel safe to talk about substance use in a non-judgmental and hopeful way, the relationship between a professional dedicating their career to supporting families and any parent can be strengthened, and children are ultimately safer for it. 

      That is why, in 2017, Illuminate Colorado developed the Smart Choices Safe Kids Conversation Guide for Professionals to learn how to incorporate topics like substance use and safe storage into everyday conversations with families. Since then, Illuminate has trained over 600 professionals across Colorado to have strength based conversations with families and distributed more than 8,000 safe storage bags making their way into the hands of Colorado families.

      The strength based conversations promote a multi-generational approach, encouraging professionals to think critically about substance use and substance use disorders, as each family is unique. The training includes a “Conversation Guide” of scripts for professionals to use as guidelines to start and continue conversations on safe homes, safe caregiving and child & family well-being, at every age and stage of life. 

      “The key to a successful conversation is to avoid judgment, stigma, and bias – actively listening and engaging with the family you are working with. All families want the best for their children and have hopes and dreams for their children’s futures.” Jason Read M.Ed., education and training program manager with Illuminate Colorado. “Using substances, whether legal, illegal, or prescribed, doesn’t change how much parents care about their children, but it may impact their ability to do what is best for them.”

      In addition to receiving tips, techniques and strategies to help keep kids safe and families healthy, professionals leave the training with Smart Choices Safe Kids brochures for people parenting in English and Spanish and safe storage bags to share with families. With the brochure inside of the bags, professionals have a tool to universally share with families to continue conversations around safety in the home. 

      Taking the Conversation Guide training has provided our staff with the language and strategies to have difficult conversations with the families we support,” shared Sherry Price, deputy director of Hilltop Family Resource Center one of many organizations that have encouraged their staff to take the Conversation Guide training. “Giving safe storage bags to families has been a life-saver in promoting a safe home and reducing risk of children accidentally ingesting harmful substances such as prescriptions, legal substances and poisonings.”

      Many home visitors already talk about where the cleaning products are stored, or keeping certain items out of reach of small children. Now they can incorporate the bag into a conversation about safety, and talk about what other items could be stored in the locking bag, like medications, edibles or paraphernalia, for example. 

      And in 2021, in addition to supporting Colorado professionals, Illuminate is set to begin training Head Start staff across the country to use this Conversation Guide for Professionals, in partnership with the National Center of Health, Behavioral Health and Safety (NCHBHS), under the Office of Head Start, an Office of the Administration for Children & Families. Collaborating with NCHBHS in this way puts Illuminate in the company of some extraordinary national leaders in child development. Other partners in the NCHBHS include: Sesame Workshop, Child Trends, Georgetown University Center for Child and Human Development and Child Trauma Research Program, to name just a few.

      “This is an exciting endeavor to help build knowledge and comfort in having conversations with families about substances and substance use all across the country,” said Anne Auld director of education for Illuminate Colorado“Over the course of the next five years, we will not only train Head Start staff across the nation, we will also create a Train the Trainer model to ensure organizations have ongoing access to this training and increased organizational capacity to strengthen families and their own communities. That’s how we create transformation change.” 

      Contact Us

      Learn more about the Smart Choices Safe Kids and the Conversation Guide for Professionals.

      The FASD Project is Coming to Denver Feb 12-13

      The FASD Project is Coming to Denver Feb 12-13

      The FASD project is a film seeking to rapidly increase awareness of the risks of alcohol consumption in pregnancy within a short period of time, given the significant increase in alcohol consumption since the onset of the global pandemic.

      This film aims to bring awareness about Fetal Alcohol Spectrum Disorders (FASD) and provide detailed scientific information on prevention, while aiming to start discussions about solutions to current problems facing the community. Through the course of our film journey, producers will be interviewing top scientists, clinicians, psychologists, lawyers, directors of Public Health offices and health institutes, and most importantly, parents and family members of individuals with a FASD.

      They will follow ‘a day in the life’ of those living with and impacted by a FASD to present to the viewers how living with an FASD shows up in day-to-day life.

      Focusing on impacted individuals who are doing well in addition to individuals who are not faring as well due to incarceration, homelessness or major mental health challenges exacerbated by FASD, this film is aim to share your lived experiences. 

      As the Colorado Chapter of the National Organization on Fetal Alcohol Syndrome  (NOFAS), Illuminate Colorado is encouraging anyone willing to share their experiences to participate in this important opportunity. The FASD Project is tentatively scheduled to visit in the greater Denver  to engage with people willing on Friday February 12th and Saturday February 13th.

      If you are interested in learning more or want to signing up, visit www.thefasdproject.com.

      You can also get answers to many questions regarding things like COVID precautions during photoshoots by downloading the The FASD Project Photoshoot FAQs.

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