IWG-A Town Hall
Video: IWG-A - Town Hall 01-20-2023
Grace Schoessow, Greene County Educational Service Center
Targeted Priority: Families are supported early and often to envision a positive, possible future for their children and access what’s needed to achieve that vision.
What is a best practice or innovation you've seen regarding this targeted practice?
Infant Early Childhood Mental Health Consultation providing critical services to stabilize families early and often when they are newly grappling with the reality of seeking and understanding an autism diagnosis for their child, and the related difficulties accessing appropriate childcare and maintaining employment. Families early in the process need their cross systems partners to collaborate to support the family's wellbeing as they learn to adjust and become oriented as to how to help their child thrive. IECMHC are trained to use a programmatic lens to help ensure the family's vision for their child as a part of a school family is honored. Too often a child will be asked to leave a center (suspended or expelled) which places stress and strain on the family; and in the worst case scenario- may change how the child is perceived by the family (as bad vs. in need of appropriate support). Families need childcare centers that are ready to serve their child, where-ever the child may be on their journey, pre-diagnosis to diagnosed with ASD. Childcare and educational centers benefit from the support of an IECMH Consultant, working in a relational way to address the specific needs for professional development while holding in mind the needs of the classroom, family and child.
What is a barrier or challenge you've seen regarding this targeted practice?
The IECMH Consultant workforce is in the process of growing. There is basic coverage in all 88 counties, however the needs exceed the capacity currently. In Greene County we have partnered with our Board of DD Early Intervention, HMG, child care centers and pubic preschools to work towards collectively ensuring families are supported early and often.
Do you have any general comments on this targeted priority?
IECMH Consultants regard families and their children as the experts in their own lives, and come alongside to provide personalized mental health services that support the journey through emotional ups and downs of navigating through the uncertainties of the early childhood years.
Laurie Cramer, Autism Society of Greater Akron
Targeted Priority: Autistic Ohioans have opportunities for life-long learning and career advancement that align with preferences, interests, needs, and strengths.
What is a best practice or innovation you've seen regarding this targeted practice?
For individuals who are not as involved, companies such as "The Precionists" and "Autism 2 Work" have wonderful programs that support learning and career advancement in a supportive environment.
What is a barrier or challenge you've seen regarding this targeted practice?
For individuals who are more involved and cannot work independently, the system isn't there yet. Job coaches are not trained in supporting individuals with Autism.
Do you have any general comments on this targeted priority?
As a parent, I feel like we (including the school system) invested hundreds of thousands of dollars into early intervention only to go into an adult world that doesn't speak my son's language. While I believe he could be a great employee, he needs to be supported by someone who knows how he learns.
Targeted Priority: Autistic Ohioans and their families understand their living options, can navigate the needed resources, and advocate for their needs.
What is a best practice or innovation you've seen regarding this targeted practice?
No idea.
What is a barrier or challenge you've seen regarding this targeted practice?
Having just been through moving my son out of our family home, I can say transitioning is very complex and families are left largely on their own to figure it out. While we are giving 10,000 foot direction, it is up to us to "find" the right fit. We are then faced with interviewing -- from a list of hundreds -- providers who think can support our children in the community. Then staff show up with little to no training and once again, do not speak my son's language. VERY intense involvement is required by the family to ensure everything from medicine being administered correctly, to community outings, to ensuring safety.
Do you have any general comments on this targeted priority?
DSP's should be incentivized to receive certificates that increase their pay. While I am an advocate of increasing DSP pay, I am also an advocate of increasing their training in all kinds of needed skills: Nutrition, Behavioral Support, Planning Outings, Working with people with no language, etc. I am shocked at what little training DSP's have and there is no incentive by them -- or their employer -- to change that.
Targeted Priority: Ohio’s public safety and emergency response systems (i.e., police, fire, emergency rooms) have accurate information about autism, purposeful, pro active interaction with autistic Ohioans, and resources for handling encounters and emergencies.
What is a best practice or innovation you've seen regarding this targeted practice?
Take Me Home program is a good start.
What is a barrier or challenge you've seen regarding this targeted practice?
First responders are not trained in Autism, which can be a life or death mistake.
Do you have any general comments on this targeted priority?
Consistent police training in Autism should be mandated by the state.
Targeted Priority: Autistic Ohioans experience improved health, including access to affordable, quality healthcare and wellness activities.
What is a best practice or innovation you've seen regarding this targeted practice?
The Autism Society of Greater Akron has a healthcare training we have conducted locally for medical personnel. We are expanding it.
What is a barrier or challenge you've seen regarding this targeted practice?
Once again, adult healthcare providers are NOT prepared for medically involved individuals with Autism. They have NO idea how to work with a non-verbal individual, no idea how to adapt a procedure to "get the job done" and no idea about best practices.
Do you have any general comments on this targeted priority?
My son is also medically involved and locally, our hospital JUST opened a Medical Center targeted toward people with complex medical needs. It is in its infancy and has a HUGE learning curve. Meantime, I am depending on his pediatric supports to maintain his health care needs.
Megan Surso, Strongsville City Schools
Targeted Priority: Families are supported early and often to envision a positive, possible future for their children and access what’s needed to achieve that vision.
What is a best practice or innovation you've seen regarding this targeted practice?
In regard to early intervention, our district has trained registered behavior technicians that are our own employees in each preschool classroom. There is one lead teacher, one special education assistant, and one RBT in each classroom, overseen by a BCBA. This has been a huge help to our preschool, especially our students with Autism, who benefit from that level of support in the general education setting. We also involve the Cuyahoga County Board of Developmental Disabilities and/or PEP Connections, Ohio Rise as appropriate to get families connected early and to have conversations with them beyond early childhood. It is never too early to start the conversation.
What is a barrier or challenge you've seen regarding this targeted practice?
One barrier to this is the budget. There is a certain number of hours required for RBT supervision, which comes at a cost to the district. However, if the district is invested in early intervention, then budgetary allowances should be made in this area.
Do you have any general comments on this targeted priority?
Families need to be supported early and need to be made aware of the PK-12+ continuum. It seems early to have that conversation in preschool, but someone needs to inform parents of what opportunities look like at each grade level in order to allow them to appropriately prepare themselves and their families for the transitions that occur.
Ron Thornbury, Southern Ohio ESC, Region 14 Hopewell Center
Targeted Priority: Families are supported early and often to envision a positive, possible future for their children and access what’s needed to achieve that vision.
What is a best practice or innovation you've seen regarding this targeted practice?
Parents often say they want their children to communicate and get along socially, but the priorities of K12 education are overly focused on academic standards. It has been drilled into teachers that progress on academic standards is the priority. Teachers often address social and communication skills, but more is needed.
What is a barrier or challenge you've seen regarding this targeted practice?
Over-emphasis on academic standards and understanding how to provide evidence of progress in social and communication skills.
Do you have any general comments on this targeted priority?
I call it a paradigm shift to re-prioritize social and communication skills over academics and reward effort for progress. Ways to measure are available but not well known.
Targeted Priority: Community leaders and organizations are welcoming of people with autism and their families and include them in focus groups, advisory boards, planning, and projects.
What is a best practice or innovation you've seen regarding this targeted practice?
I worked with a High School teacher who was able to arrange actual wages for his disabled students to earn on various jobs. The effect of actual money earned on the motivation of the students was very powerful.
What is a barrier or challenge you've seen regarding this targeted practice?
Rules on paying students for work.
Do you have any general comments on this targeted priority?
Find a method of establishing an accountable system to allow actual payment in cash to allow students to experience a real connection to work. Despite liking my job, I work for the pay too.
Targeted Priority: Ohio families, medical providers, early care workers and others know how to access free, developmental screening and monitoring.
What is a best practice or innovation you've seen regarding this targeted practice?
Early identification and service for children who appear to have autism but have not been formally diagnosed by the medical community. I know Help Me Grow does this but I also see clearly identifiable autism un-diagnosed and therefore priorities like social and communication compete with other developmental skills.
What is a barrier or challenge you've seen regarding this targeted practice?
Long waiting lists for medical diagnosis are typical. Some children are waiting 6 months for services. How can we know intervention should be as early as possible and accept such long wait lists for medical and behavioral services?
Do you have any general comments on this targeted priority?
Can we identify the reasons for long wait lists and address them? What is Ohio's ADEP program and how is it working?
Ginny Gates, Parent, Independent Provider, Dublin City Schools Teacher
Target Priorities: Families are supported early and often to envision a positive, possible future for their children and access what’s needed to achieve that vision. Employers and co-workers have accurate, reliable information about autism, available resources and supports.
What is a best practice or innovation you've seen regarding this targeted practice?
Collaboration with all stakeholders.
What is a barrier or challenge you've seen regarding this targeted practice?
Lack of understanding and communication of services to parents/guardians from all stakeholders. Difficulties navigating options in regards to services, education, supports and medical services.
Do you have any general comments on this targeted priority?
I believe we can do better supporting parents/guardians.
Targeted Priority: Autistic Ohioans and their families understand their living options, can navigate the needed resources, and advocate for their needs.
What is a best practice or innovation you've seen regarding this targeted practice?
I have not experienced best practice in this area.
What is a barrier or challenge you've seen regarding this targeted practice?
Lack of consistency in care and appropriate options with the individuals needs and care placed first.
Do you have any general comments on this targeted priority?
I believe we can do better!
Targeted Priorities: Ohio’s public safety and emergency response systems (i.e., police, fire, emergency rooms) have accurate information about autism, purposeful, pro active interaction with autistic Ohioans, and resources for handling encounters and emergencies. Families have the information, knowledge, and resources to engage in long-term planning for themselves and their autistic family member.
What is a best practice or innovation you've seen regarding this targeted practice?
Collaboration with families building relationships with agencies and individual.
What is a barrier or challenge you've seen regarding this targeted practice?
Parents/guardians don’t know what is av or how to access services.
Targeted Priorities: Autistic Ohioans and their families are supported to build relationships and develop robust networks that go beyond “eligibility-based supports.” Educators and providers support people in developing skills, hobbies and interests that build relationships.
What is a best practice or innovation you've seen regarding this targeted practice?
I have not experienced best practices in this area. We have created opportunity for our son on our own.
What is a barrier or challenge you've seen regarding this targeted practice?
Lack of collaboration between agencies, parent/guardian, schools always trying to fit the individual into what is already available.
Do you have any general comments on this targeted priority?
Yes… lots of ways we can do better
Targeted Priority: Ohio families, medical providers, early care workers and others know how to access free, developmental screening and monitoring.
What is a best practice or innovation you've seen regarding this targeted practice?
Again no one knows what then other agency/provider can do.
What is a barrier or challenge you've seen regarding this targeted practice?
Lack of training and collaboration. Large caseloads make it difficult to truly know the individual and individualize care and opportunities.
Targeted Priorities: Ohioans have access to information about supported decision making and alternatives to guardianship and opportunities to learn from one another. Autistic Ohioans and their families can participate in advocacy and leadership training, learn how to share their stories, and participate in public policy.
What is a best practice or innovation you've seen regarding this targeted practice?
Providing opportunities and communication with families on the options and how to participate.
What is a barrier or challenge you've seen regarding this targeted practice?
Lack of guidance
Lisa Cordaro, Family of an Individual With a Disability
Targeted Priorities: Families are supported early and often to envision a positive, possible future for their children and access what’s needed to achieve that vision. Employers and co-workers have accurate, reliable information about autism, available resources and supports. Autistic Ohioans have opportunities for life-long learning and career advancement that align with preferences, interests, needs, and strengths.
What is a best practice or innovation you've seen regarding this targeted practice?
Families with higher income are able to create and start a business that centers around their ASD person. Families partner with SSA and local business to find perfect job for ASD person.
What is a barrier or challenge you've seen regarding this targeted practice?
Usually only affluent, well educated, high income families can start and maintain businesses. Similarly, these families have more connections and influence with SSA, county and businesses which leads to better outcomes for ASD person. These families often have extra income that can support ASD person with private assistance like extra home/work providers or transportation.
Do you have any general comments on this targeted priority?
A person with ASD is only able to participate fully if knowledgeable appropriate support is provided everyday to every job. The ASD individual who has behaviors or low communication should not be expected to do a job while waiting for a new person to learn about their communication style, preferences, behaviors and/or sensory needs.
Targeted Priorities: Community leaders and organizations are welcoming of people with autism and their families and include them in focus groups, advisory boards, planning, and projects. Autistic Ohioans and their families understand their living options, can navigate the needed resources, and advocate for their needs. Technology is leveraged and maximized to increase community access, independent living, transportation, and other community supports.
What is a best practice or innovation you've seen regarding this targeted practice?
Admission to museums based on Medicaid status. Some cleveland museums participate but not all. Uber and Lyft are valuable tools for transportation. But tipping the driver comes out of the consumers pocket and can bankrupt a clients checking acct.
What is a barrier or challenge you've seen regarding this targeted practice?
1 barrier is Medicaid status vs Snap status. Not all Medicaid consumers have Snap. 2nd barrier is not all museums or institutions participate. And if they do, sometimes people with disabilities are given dedicated times to participate. Please provide choices or options. Sensory friendly events are valuable experiences but not necessary for every person with ASD.
Targeted Priority: Families have the information, knowledge, and resources to engage in long-term planning for themselves and their autistic family member.
What is a best practice or innovation you've seen regarding this targeted practice?
Cuyahoga County has a Social Security specialist to help families navigate and decipher SSI laws.
What is a barrier or challenge you've seen regarding this targeted practice?
Only 1 Specialist and if you don’t know to ask, you may not get referral to them.
Do you have any general comments on this targeted priority?
Assistance with SSI should be a service families automatically receive. Same for how to apply for Medicaid. It’s a detailed application. Many counties do not assist because they consider the county board and Medicaid separate entities with separate supports. Most families perceive the county/state DoDD and Medicaid as 1 supportive resource and have trouble resolving problems with claims, healthcare and behavioral treatment.
Targeted Priority: Spiritual communities actively and meaningfully include people with disabilities and their families, and have the knowledge, tools, and resources to do so.
What is a best practice or innovation you've seen regarding this targeted practice?
Free Tickets to Playhouse Square or baseball games in Cuyahoga county.
What is a barrier or challenge you've seen regarding this targeted practice?
I will repeat my statement of affluent families gaining more access than low income or poorly educated families. Also the statement “you don’t know what you don’t know” comes into play. How do families know about this opportunity if they don’t follow social media, have poor reading skills and little interaction with SSA? And how do they know if their person with ASD will be accepted by the staff and patrons of the venue? Sometimes maladaptive behavior occurs and families are not equipped to manage in a social setting.
Do you have any general comments on this targeted priority?
Keep the plays and games coming but assist families at the venue.
Targeted Priorities: Autistic Ohioans experience improved health, including access to affordable, quality healthcare and wellness activities. Cross-system teams understand social determinants of health, healthcare access, and wellness as part of “capacity for independent living” in transition planning.
What is a best practice or innovation you've seen regarding this targeted practice?
Cuyahoga Cty has IDT team that views person with ASD from different points of view.
What is a barrier or challenge you've seen regarding this targeted practice?
Good team. Expand pilot program to encompass all families interested.
Targeted Priority: Ohioans have access to information about supported decision making and alternatives to guardianship and opportunities to learn from one another.
What is a best practice or innovation you've seen regarding this targeted practice?
Families are aware that they need guardianship for their adult children, due to county meetings or family training.
What is a barrier or challenge you've seen regarding this targeted practice?
There is no assurance for finding forms and navigating probate court. Parents usually need other parents who’ve already been through the process to help.
Do you have any general comments on this targeted priority?
Counties should appoint a person that is an educator and liaison for families needing guardianship.