Formerly known as MOFAS: Minnesota Organization on Fetal Alcohol Syndrome

Exciting News
from MOFAS

If you're looking for the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) you have come to the right place. We have some exciting news about our organization. We have a new name! MOFAS has officially been renamed Proof Alliance. Our mission remains the same: to prevent prenatal alcohol exposure and to improve the quality of life for people living with fetal alcohol spectrum disorders (FASD).

Why PR%F

We now have the proof that prenatal alcohol exposure is a leading cause of brain injury in children. We have the proof that FASD is 100% preventable and people living with an FASD can reach 100% of their potential.

Why Alliance?

We seek to build powerful alliances with people with an FASD, their families, legislators, experts in the field, new partners, and community members to bring awareness, research, and services to this field.

What's Next?

Proof Alliance is rebranding, expanding, and we're moving! We have a new logo, website, and prevention campaign to help change the norms around drinking during pregnancy. And in May 2019 we will be moving to a stand-alone building. Proof Alliance commits to the people of Minnesota and we will continue to develop transformative programs to help Minnesotans impacted by FASD.

Legislative Priorities

Background

Prenatal exposure to alcohol is a complex public health issue that impacts us all.  Alcohol exposure during pregnancy is a major cause of preventable brain injury, birth defects, learning problems and growth issues. 1-3

At Proof Alliance, we are deeply committed to the prevention of prenatal alcohol exposure. There are very few public health problems where there are such clear and compelling solutions available. If alcohol is not consumed during pregnancy a child will not have the issues associated with prenatal alcohol exposure.4 However, how and why exposure happens is very complicated.5-8 Putting forth policy solutions that address this issue is a top priority.

It is also important to understand that at the core of everything Proof Alliance does, we believe that everyone is worthy of inclusion and respect.  We find people impacted by fetal alcohol spectrum disorders (FASD) and their families face difficulties and barriers in accessing services they need to be successful. People with an FASD deserve equitable access to an education, appropriate housing and employment, and services and supports. FASD cannot be cured but it can and should be accommodated.9

Click here to download a printable version of the 2019 Legislative Priorities

2019 Legislative Priorities

Increase appropriation for Community-Based Services for Pregnant Women, Mothers and Children

With ongoing support, mothers with substance use disorders (SUD) can maintain sobriety and lead healthy lives with their children.

Proof Alliance has advocated for Department of Human Services (DHS) funding that provides these supports.  Women in this program receive long term, community-based support as they make the changes they need to make. This program has proven to be highly effective. Participants in the program who are pregnant consistently have toxic free pregnancies, with 87% of babies born testing negative for substance exposure.10 We are advocating for $750,000 additional funding to serve more families across the state.

Programs are currently funded in Hennepin, Olmsted, and Winona counties. Proof Alliance recommends funding be allocated to continue funding current sites and expand to more communities.

Increase appropriation for FASD prevention, screening, diagnosis, intervention and support.

Because of relentless advocacy and awareness building on the realities of prenatal alcohol exposure and FASD, the unmet need for education, services and support has reached near-crisis level. New prevalence data now confirms that as many as 1 in 20 children across all populations are living with FASD.11 The impact in our schools, communities, judicial system, and child protection is overwhelming if screening, diagnosis, and support services are not available across the state.

Juxtaposed against this landscape is the empowering knowledge that FASD is 100% preventable. Wise investment in strategic, statewide, and proven programs will save the state literally millions of dollars.

Currently much of Minnesota has limited or no capacity to evaluate children with a potential FASD. There are 700 evaluation slots available per year in Minnesota. 96% of those are available in the seven county metro, with 4% being available outside the metro. This investment will create additional capacity for children who do need an evaluation and also invest in additional screening education for primary care doctors and pediatricians to screen for FASD. Proof Alliance recommends an increase of $200,000 in the base appropriation to address the lack of diagnostic services in Minnesota.

Decrease Parental Fees for MA (Medical Assistance) TEFRA

Proof Alliance has joined with Autism Society of Minnesota, ARC Minnesota, and Minnesota Consortium for Citizens with Disabilities to advocate for lowering TEFRA parental fees associated with Medical Assistance (MA). MA-TEFRA (Tax Equity and Fiscal Responsibility Act) is the Minnesota run option that provides children with disabilities who would not otherwise qualify for Medicaid due to their parent’s income. MA-TEFRA requires that parents of eligible children pay using a sliding scale according to their income. There is a major concern over the fees and the barrier they are creating for people with disabilities and their families to access the health care they need.

Many families with children with FASD are impacted by these fees which is why Proof Alliance has become a strong partner in this initiative.

Amend the Brain Injury Waiver

FASD is a lifelong medical condition, not a treatable mental health disorder. Brain injury can be the most challenging part of the FASD diagnosis, too often leading to school failure, juvenile or criminal justice involvement, and early death.13 The Brain Injury (BI) waiver could help people with some of the most severe brain injuries from prenatal alcohol exposure stay in the community. We recommend people with a brain injury acquired by fetal alcohol exposure be able to qualify for the brain injury waiver when appropriate.

Currently, people with an FASD who qualify for a waiver to help them live in the community typically receive a Developmental Disability (DD) waiver or a Community Access for Disability Inclusion (CADI) waiver. While CADI and DD waivers help many people with an FASD, others have an even higher level of need.

There is a third type of waiver—the Brain Injury (BI) waiver—that could help people with some of the most severe brain injuries from prenatal alcohol exposure stay in the community. Due to language in the statutes, only people who have had a brain injury after birth can qualify for a BI waiver.

Expanding the definition of “brain injury” would create access to possible brain injury-focused services. Moreover, changing the definition of brain injury would establish an opportunity to educate professionals who work with people with an FASD, such as mental health, school, corrections, and healthcare staff.

Sources:

[1] Rodríguez JJ, Smith VC. Prenatal Opioid and Alcohol Exposure: Understanding Neonatal Abstinence Syndrome and Fetal Alcohol Spectrum Disorders to Safeguard Maternal and Child Outcomes. Zero to Three. 2018;38(5):23-28.

[2]Westrup S. Foetal Alcohol Spectrum Disorders: As Prevalent as Autism?. Educational Psychology in Practice. 2013;29(3):309-325.

[3] Masotti P, Longstaffe S, Gammon H, Isbister J, Maxwell B, & Hanlon-Dearman A. Integrating Care for Individuals with FASD: Results from a Multi-stakeholder Symposium. BMC Health Services Research. 2015;15(1),1-12.

[4] Burd L, Blair J, Dropps K. Prenatal Alcohol Exposure, Blood Alcohol Concentrations and Alcohol Elimination Rates for the Mother, Fetus and Newborn. Journal of Perinatology. 2012;32(9):652-659.

[5] Hettema J, Cockrell S, Ingersoll K, et al. Missed Opportunities: Screening and Brief Intervention for Risky Alcohol Use in Women’s Health Settings. Journal of Women’s Health. 2015;24(8):648-654.

[6] Wilder Research. Alcohol Use and Pregnancy: The Beliefs and Behaviors of Minnesota Women. Published 2013.

[7] Substance Abuse and Mental Health Services Administration (SAMHSA). Table 2.10: Admissions aged 12 and older, by marital status, living arrangements, pregnancy status, and veteran status according to primary substance of abuse: 2010. https://archive.samhsa.gov/data/2k12/TEDS2010N/TEDS2010NTbl2.10.htm

[8] Healthy Child Manitoba. Who Drinks Alcohol During Pregnancy?  http://manitoba.ca/healthychild/fasd/whywomenandgirlsdrink_more.pdf

[9] Subramoney S, Eastman E, Adnams C, Stein DJ, Donald KA. The Early Developmental Outcomes of Prenatal Alcohol Exposure: A Review. Frontiers in Neurology. 2018; 9(1108).

[10] Grantee reports to Proof Alliance, 2014-2019.

[11] May et al. Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities. JAMA. 2018;319(5): 474-482.

[12] Weyrauch D, Schwartz M, Hart B, Klug M, Burd L. Comorbid Mental Disorders in Fetal Alcohol Spectrum Disorders: A Systematic Review. J Dev Behav Pediatr. 2017;38:283-291.

[13] Streissguth AP, Bookstein FL, Barr HM, et al. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental and Behavioral Pediatrics. 2004;25(4):228-238.


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