Emerging Policy Issues that Impact the FASD Community
"let's talk!"
@ MOFAS Sponsored Community Meetings on FASD
Tell us what your thoughts are. Come learn, share and stay informed on FASD.
The Minnesota Organization on Fetal Alcohol Syndrome invites the public to participate in any one of the Community Meetings being held around Minnesota. At these meetings, you will have an opportunity to:
- Attend a FREE 1 hour FASD Basic Training (Certification of Attendance available)
- Become an engaged FASD advocate
- Stay informed on FASD parent support options
- Learn new FASD funding opportunities for your community
- Share your recommendations for FASD Public Policy Priorities with Legislators
Save the Dates:
Mankato - Friday, September 21, 2010
St. Paul - Friday, October 8, 2010
Brainerd- Friday, October 22, 2010
Attendance is FREE but pre-registration will be REQUIRED.
More information to follow, but if you have immediate questions, please contact Jenn at MOFAS at jenn@mofas.org or 651-917-2370 or 866-90-MOFAS.
National Research Opportunity
You are invited to participate in a national research study of supports for families of youth with disabilities. This is a project of PACER Center funded by the Administration on Developmental Disabilities as a Project of National Significance National Family Support Survey. Click here to participate in the survey.
FASD Day on Hill Makes an Impact
Fetal Alcohol Spectrum Disorders (FASD) impacts us all. That was the message that nearly 100 self-advocates, family members, community members, Board members and staff representing the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) wore on their bright green t-shirts as they held FASD Day on the Hill in the Capitol Rotunda on Tuesday, March 9th. Each came with their own story on how this disability affects their life.
U.S. Senator Tim Johnson (D-SD) has introduced SF. 3154 The Advancing FASD Research, Prevention, and Services Act to improve research, prevention, and services for Fetal Alcohol Spectrum Disorders.
The legislation contains provisions to require the National Institutes of Health to develop a research agenda, improve the ability to screen and identify disorders, and facilitate the development of statewide systems and community partnerships. The bill would also provide federal grants be made available to states, tribes, tribal organizations and other non-profit organizations to develop support services such as vocational training, housing assistance, and medication monitoring services for adults with the disease.
· Find your U.S. Representative and urge them to sign on and support this important legislation.
· Tell Senator Franken and Senator Klobuchar how critical this piece of legislation is to MN Families living with FASD!
Exemption From Mandated Reporting for Prenatal Health Care Providers - Bill Number HF. 3059/SF. 2695
MOFAS Position: The Minnesota Organization on Fetal Alcohol Syndrome (MOFAS), The City of Minneapolis Department of Health and Family Support, The Native American Community Clinic and other collaborators are in support of this legislation.
Current Law: If a pregnant woman discloses her alcohol use to her health care provider, the provider is mandated to report her to the local welfare agency.
Goals of HF. 3059/ SF. 2695:
· Creates a narrow exemption from mandated reporting requirements for health care providers in a prenatal setting.
· Removes barriers and encourages women to obtain vital prenatal care, resulting in healthier babies.
· Builds trusting, safe relationships between health care providers and pregnant women, enabling providers to talk to patients about services available to reduce risks of poor birth outcomes.
· Health care providers will create and implement a comprehensive prenatal plan that supports women to end use of alcohol, tobacco and other drugs for the duration of the pregnancy.
Additional questions regarding the support of this legislation, please contact Sara Messelt or Marissa Lang at MOFAS at 651-917-2370.
Legislative Changes to PCA Program- Overview
What's the latest with PCA (Personal Care Assistant) qualifications?
On Tuesday, April 20, 2010, the Department of Human Services (DHS) presented the “2009 Alternatives to PCA Care Update” at the Senate Committee of Health and Human Services. In 2011, the criteria for PCA eligibility will change from dependency in at least one activity of daily living to two activities. What exactly does that mean? Well, “activities of daily living” are defined as dressing, grooming, bathing, positioning, transferring, mobility, eating, toileting. Additionally, Level One behavior will no longer qualify individuals. This stringent criteria change essentially writes out behavioral challenges in PCA work to focus predominately on physical challenges. This is devastating to families and individuals living with FASD. DHS reported that 8% of those not dependent on ADL and who exhibit Level One behavior have Fetal Alcohol Syndrome. Many policy makers and advocates understand that support for those with non-physical disabilities is just as crucial and can actually be cost effective.
Click here to continue article
The PCA changes approved in the 2009 Legislative session are taking effect. Families are getting new assessments done on their eligibility for PCA services and the number of PCA hours they will be allowed. Some families are seeing cuts in service. The Minnesota Disability Law Center (MDLC) has also raised concern that the rights of those receiving cuts are being violated.
If Your PCA Services are Reduced or Terminated:
- When you get a Notice of PCA Termination or Hours Reduction, you should immediately request an appeal in writing and ask that PCA service continue pending appeal.
- Mail or fax a letter to:
Appeal Office
Minnesota Department of Human Services
P.O. Box 64941
St. Paul, MN 55164-0941
Phone - 651-431-3600
Fax - 651-431-7523
- Keep a copy of this letter.
- Tell your PCA provider that you have appealed and have asked for continued PCA services pending appeal.
Share Your Story and Learn More:
- Share how PCA changes impact your life by taking this survey
- To view a summary of the legislative changes prepared by the The Minnesota Consortium for Citizens with Disabilities (MN-CCD), click here.
- Information about the PCA changes can be found at the Disability Law Website or to ask specific questions about changes to your PCA services call 1-800-292-4150.
- Why is Representative Larry Hosch proposing legislation that supports cuts to PCA eligibility? Click Here to find out.
Fabulous speakers included Maria Tripeny and her son, Paul, Hunter Sargent, Monica Adams, Steve Larson from ARC MN and several legislators including Senator John Marty and Senator Kathy Sheran. Other highlights included the Rojas/Capitaine family joining Representative Karen Clark on the House Floor, pulling Representative Obermueller off the House Floor to meet the Rother's and hear their amazing story, and Representative Nora Slawik and Nancy B. bonding over raising children with special needs. A wonderful way to wrap up the day was landing on the KARE 11 6 PM News. To see the news story, click here
Tell us what your thoughts are. Come learn, share and stay informed on FASD.