Alright – so, why do non-minority agencies such as Pacer, Family Voices, Arc and Autism Society of Minnesota take all of the state and federal advocacy funding? Just because they hire one person from each minority community does not mean communities of color are served well. One person can not serve all of us.
For example, PACER which is supposed to be parent advocate agency takes all of the educational advocacy funding from both the state and the federal government. Yes, it has one Somali advocate – Hassan who is simply fantastic but given the sheer number of Somali families whose children have autism, he can’t serve all of us. Not to mention other Somali families whose children have other disabilities.
Arc, Family Voices and Autism Soc of Minn take all of the funding from both state and federal government and is supposed to help all parents in Minnesota who may have complaints or concerns with almost every agency including the counties, the Medicaid agency, etc. While Arc has one Somali – Family Voices and Autism Soc of Minn do not. Even then it would not be enough to serve our community and all of the other communities of color. The question then is why do they need to take all of the funding? Why aren’t there minority advocacy agencies that can help their own communities? I think this needs to stop and communities of color must advocate for their own communities. Give me a fish and you fed me for one day vs teach me how to fish and you fed me for life.
Furthermore, if you follow these mainstream advocacy agencies – they are mostly controlled by the same small group of Minnesotans. For example, the current chair of Autism Soc of Minn used to be an Arc board member. The same goes for all of the leaders within these small self-serving advocacy agencies. They also often don’t have adequate diversity in their leadership which adds to the problem. The new executive director of Autism Soc of Minn before she got the job had zero, zilch – nada experience running a non-profit or an autism agency. Yet, she was nurtured, sent to trainings and conferences. If a person of color applied for that job – they would’ve said, wait for it…. drum roll please…..”we would love to hire you but you don’t have the qualifications the job requires”.
I say it is time for us to speak for ourselves, to advocate for ourselves, to stand up for ourselves and to stop allowing others do for us what we are clearly capable of. So how do we do this. Well – let’s explore where this funding comes from.
Clearly, I can’t be the Jackie of all trades but few years ago – I advocated at Health Resources & Services Administration (HRSA). This is the federal agency that gives a chunk of the federal funding to state disability advocacy agencies. They also fund dozens of university LEND programs and state health department’s child and maternal health divisions, which include children with special health care needs. I had one simple question, why are these mainstream agencies taking all of the federal funding for advocacy and how are they reaching out to minority communities particularly parents with children on the autism spectrum disorder. After many months of negotiating and advocating – I made a small dent but not enough to move the needle towards equality. For example, the Univ of Minn created a diverse website in their LEND program, had to take more students of color into their LEND program, and hired one Somali in their ICI dept. The health dept or the do nothing state agency hired one Somali person to help Somali autism families, and had to share the autism grant they got with actual minority owned agencies. Sadly that was it. Nothing really changed regarding Pacer, Arc, Family Voices and Autism Soc of Minn.
I think it is time to go back to HRSA and to the state education department and say we want to be at the table and advocate for our own community. There are great Somali owned agencies that have the capacity to do this such as the Somali American Parent Association (SAPA). So why should Pacer say they will help us when we can easily go to SAPA and be treated fairly, with respect and dignity.
Below are some of my simple questions and what HRSA response was:
From Idil: “Why can’t Pacer do similar workshops for communities of color including Somalis and give the same information they seem to give to Caucasian families via webinar?”
PACER’s Family to Family Health Information Center (F2F HIC) have initiated many projects to address underserved populations. PACER’s F2F HIC have 4 multicultural staff that are parents of CYSHCN. Hassan Samantar (PACER staff person) has presented at many workshops for Somali families in the following communities in the past 12 months: St. Paul, Minneapolis, Apple Valley, Burnsville Savage, St. Cloud and Bloomington. In addition PACER has utilized many different media outlets that cater to diverse communities including radio, television and newspaper. And PACER advocates who serve multicultural families collaborate as partners with other multi-cultural organizations. The PACER advocates conduct home visits with underserved populations and incorporate health information as needed by the family visited. PACER advocates provide families during their home visits information on enrollment in MA, accessing waivers or support grants, understanding how to work with county case managers, and finding and navigating community based services. The home visits may also include accompanying families to appointments with health care providers.
Leticia Manning, MPH
Lieutenant, United States Public Health Service
Maternal and Child Health Bureau
Division of Services for Children with Special Health Needs
5600 Fishers Lane
Rockville, Maryland 20857
I am the new project officer for the Pacer Center, Inc. (a Family to Family Health Information Center grantee) and I will try to address your concerns to the best of my ability.
HRSA is committed to ensuring that underserved populations have access to health care services. This includes ensuring that minority populations have access to appropriate services. While we understand there are needs in a variety of populations, we also recognize that our grantees have limited resources to address huge needs and therefore must target their limited resources. As part of the grant application process and annual reporting, HRSA requires that our grantees conduct a community assessment to identify populations in that community that are most in need of services and the grantee target those populations with their work. To further their reach in the community, grantees are also required to partner with state, local agencies, and community organizations. Idil, as a community partner we appreciate that you are sharing any additional resources or partners that PACER could benefit from working with.
Then was the below response from Laura Kavanagh, MPP Deputy Associate Administrator, Maternal and Child Health Bureau at HRSA regarding the Minn Dept of Health:
Minnesota (MN) Department of Health
Grant Number: H6MMC27440
Improving Awareness of the Signs and Symptoms of autism spectrum disorder (ASD) and related disabilities (DDs) in culturally diverse communities
The grantee has translated, customized, and distributed a number of Centers for Disease Control and Prevention (CDC) Learn the Signs, Act Early materials into different languages. Thus far, they have translated into both the Hmong language for their large Southeast Asian Hmong community and the Somali language for their East African Somali community. Along with their community partners, they have printed 6,000 Milestone Moments Brochures and 3,000 First Tooth Fliers in Hmong, which are ready for distribution to local communities. They also have continued a focused outreach to the Somali community. To date, the milestone booklet (Somali version) has been downloaded 8,756 times and 3,000 translated developmental brochures were distributed to individual Somali parents and families. They recently printed another 7,000 Somali Milestone Moments brochures and 250 Community reports and have been taking orders for these materials. Additionally, regarding Latino outreach, they have ordered (over 300) Act Early materials and Amazing Me books. These materials will be distributed at upcoming community events.
Act Early Cultural Liasions and Delegates: Improving Awareness Among Culturally Diverse Communities
The project has identified key cultural liaisons/community leaders within culturally and linguistically diverse communities who will serve as community leaders and trainers of Act Early Delegates. The Act Early Delegates will then conduct outreach within their cultural communities on developmental monitoring, early signs of ASD, the importance of early screening, and the “Learn the Signs. Act Early” message. Additionally, they also plan to conduct on site Act Early trainings, phone meetings, and webinars to build ongoing capacity and skills within the Act Early Delegate network. To date, the grantee has successfully recruited and trained five cultural liaisons/community leaders from diverse communities (Hmong, Somali, and Latino) who are recruiting Act Early Delegates within their cultural communities.
Training Providers: Working with Culturally Diverse Communities:
The grantee completed a series of training activities focused on services for culturally and linguistically diverse communities. The trainings are highlighted below:
- MN’s Health Care Home Certification
- In November 2014, approximately 50 primary care providers, care coordinators and related service providers received training around ASD/DD screening, identification and connection to resources. The trainings also included a section on working with families from diverse cultures and was part of a larger training related to MN’s Health Care Home Certification.
- MN Act Early Training Webinar Series
- Webinar: “Building connections with Somali families: Culturally competent approaches to child development, early signs of ASD, and early screening.”
- Webinar: (for outreach to professionals) “Culturally Competent Approaches to Working with Somali Families around Child Development, Early Signs of ASD, and Early Screening”.
- Webinar (for outreach to professionals) “Culturally Competent Approaches to Working with Hmong Families around development”. The event was well received and has been viewed by approximately 300 individuals and groups. Interest continues in the webinar.
- Ongoing Promotion of Archived Webinar: “Building Connections with Hmong Families: Culturally Competent Approaches to Child Development Improving early identification, diagnosis, and entry into services in underserved communities
- The grantee is starting to implement activities that focus on decreasing the average age of identification, diagnosis and entry into service for children with ASD/DD with two metro area community health boards and five rural community health boards. The project activities for coordination of screening and follow-up will include:
- At a minimum, provide enrolled families two Ages & Stages Questionnaires, Third Edition (ASQ-3) intervals per year and one Ages & Stages Questionnaires: Social Emotional (ASQ: SE) interval per year until the child reaches 36 months of age;
- Implement and offer families access to the ASQ-3 and ASQ: SE on-line screening system. Families not able to use the on-line system will continue to receive screening instruments via U.S. Mail;
- Implement consistent follow-up protocols for all developmental and social-emotional screens (ASQ-3 and ASQ:SE) where a beyond-the-cutoff score or concern is identified for children ages birth to 36 months. Periodic follow up will continue until medical evaluation/assessment is complete and families are connected to services including insurance, community-based waiver programs, Help Me Grow Infant and Toddler Services (Part C) early intervention services, specialty care, and parent to parent support;
- Collect data to indicate the age of screening, referral and connection to services, and diagnosis of ASD or other developmental disability;
- Collaborate with education, human services, health care, community organizations, families, and children on a routine basis in their local communities;
- Connect to primary care providers, care coordinators and ASD specialty providers in their jurisdictions to discuss screening practices to maximize resources;
- Share lessons learned throughout the grant period; and
- Use data collected to provide guidance on system barriers around referrals and communication between primary care, public health, education and specialty care. The grantee plans to track timeliness of entry into diagnostics and early intervention services in several areas of the state. Local public health will be able to document the realities in the system so that improvements can be made in policy.
I am not sure if any of these folks are still at HRSA – I know that Diana D retired (how lovely she was), but irrespective of who is there now, change must come once and for all. This is the time for action for our community to stand up for our kiddos with autism and be part of the solution. We CAN speak and advocate for ourselves and do not need Pacer and others to do it. SAPA, Isuroon, etc. CAN do it.
Above words do not reflect any agency, candidate or committee.
Idil – Autism Mom