20 January 2012, Marquette Women’s Federated Club

In attendance were the following:

Summit organizational committee: Ellen Moore, founder of Marquette Area Autism Spectrum Disorders Support Group; Barb Nelson MA Ed, Consultant for students with ASD; Pam Kimble, LMSW, BCBA; Kate Kenney, MA CCC-SLP.

Summit invitees: Luanne Peterson, MARESA, Dir. Of Special Education

Ann Gendron, Early On

Dr. Laura Reissner, NMU Department of Education

Sarah Peura, SAIL/SPAR

Kirsten Matthews, OT, sensory processing certified

Mary Swift, Recipient Rights Supervisor, Pathways

Peter Holliday, Director Student Support Services NMU

Karin Hansard, SEPAC president, Lose the training wheels coordinator

Nancy Conklin, Ishpeming Special Ed. Coordinator

Tara Gluski, Bay Human Services

Steve Lindberg, Michigan House of Representatives

U.S. Senator Debbie Stabenow’s representative, Kane Beauchamp

The Summit opened with an introduction by Ellen Moore, sharing her experience as a parent trying to understand the services that were available for her daughter as they went through the diagnostic process.

At first it seemed like not much was available locally. Some of the professionals she worked with early on referred her to sources that were not available to her: wrong age group, wrong income bracket. The Autism Speaks first 100 day kit only lists one resource in the Upper Peninsula and that’s in Newberry.

In planning this Summit, the committee realized they could easily invite over 100 professionals in the Marquette-Alger area who are committed to working with people on the spectrum if we included all the educators, therapists and other medical professionals.

The first goal of this summit is to create a comprehensive document of the resources in the area that can be widely distributed this April, Autism Awareness Month, throughout the area to professionals and parents. Second goal is to look at what resources are still needed in this area, to prioritize those needs, and seek out solutions.

Kate Kenney gave a brief introduction to the building (club house is available to rent for programs).

Barb Nelson introduced herself and her work with UPAN (Upper Peninsula Autism Network) and MARESA and her role as autism consultant. UPAN got some grant money from START to bring training here. Each district has someone getting intensive autism training working with one kid.

Barb then introduced the format of the summit. We systematically went through life stages and filled in available resources and needs. The chart included below is the record of the lists made.

Local autism services from birth into adulthood

Birth to three:

Existing

Early On

Early Headstart

Maternal infant Health

Pediatricians

Pathways

Outpatient therapy

Support group

Needed
Funding for services other than Medicaid
Advocacy
Increased awareness
Information portal/place to begin
Education/Awareness within Medical field
Training for parents
Identify websites/services to outlying areas

in summary:

outreach and education

direct services/treatment/support

Preschool:

Existing
Early Childhood Dev. Delayed Preschool

Pathways

Family subsidy

School diagnosis

School based services

Outpatient therapy

Young Athletes

Therapeutic riding

Recreational therapy SPAR

Support Group

Playgroups

Needed
Training for parents
Knowledge of how to work system (such as 2^nd opinion option at Pathways)
Better system of deliv. info to parents
Summer programs
Daycare
Training for community service providers
Baycliff

Priorities in summary

1. Outreach
2. Training for support
3. Service provision

School-age (5-transition):

Existing

Resource rooms in schools

Continuum of services

Therapeautic riding (for some)

Sib shops @ hospital

L.I.F.E. program through SAIL

MARESA transition programs

Lose the training wheels

Pathways

Sports training camp (ages 10-26)

Special Olympics

Marq. Arts and Culture Drama and Dreams

Parks and Rec activites (Alger county)

Children’s Waiver for kids 0-18 $400/month

Needed
Peer to Peer in schools (coming?)

PALS @Pathways (reinstate)
programs for kids ages 4-8 and 12-16
Additional support for community services
Create appropriate staffing ratio
Training for aides

In Summary:
Social opportunities
training for support

Adulthood:

Existing

Group homes

Supported living

SAIL/SPAR

Aktion Club (Kiwanis program)

RICC (through Com. Mental Health)

Transition I & II (MARESA)

Activity Centers

Drop In (Pathways)

Vocational programs

Michigan Rehab Services

NMU supports through Disability Services and Students Support Services

Good Will

Salvation Army

LARC and Sundara housing options

Needed:
Lakestate Industries
Employment
Transportation
Training for employers on how to utilize individuals with ASD
Community living supports
Housing options
Opportunities for productive living
Medical transition

Priorities in summary:

Opportunities for productive living

Housing options

Transportation

Additional needs and resources that came up after the summit:

Hospital as untapped resource, Women’s and Childrens, Behavioral Health outreach

Respite services available through state of Mich

Need for a developmental pediatrician in this area (hinted at)

Need for tracking system through local law enforcement

Need life planning for special needs

ALS (Adult Learning Services) –Agency similar to Bay Human Services, contracts through Pathways to offer housing and community living supports

Discussion

Some of the discussion surrounding the items on the list includes the following:

At Pathways (which provides excellent services but only to those who qualify for Medicaid of who can afford to pay for them) access codes eliminate candidates because severity isn’t indicated.

Some professionals hesitate to use a label as many who exhibit autistic like behaviors early in life transform with early intervention.

Mary Swift said the General Fund service array will change soon at Pathways.

Steve Lindberg mentioned that in the State of the State address, Gov. Snyder made passing current legislation that mandates insurance coverage for some autism therapies one of his priorities for this year.

Mary Swift and Steve Lindberg brought up how parity for all mental health funding is the issue—not just autism.

Ellen mentioned how when you play the insurance game some services that are covered, such as one on one session with an SLP for expressive language are actually more expensive than needed therapies, like group conversation skills with peers, that are not covered.

Barb Nelson noted that the unemployment rate for adults on the spectrum is 80%.

Advocacy is needed!!!!

Increased awareness is needed.

Pete Holiday asked the question, “What is the portal?” Where can we send people to start looking for the proper resources?

As we talked about early identification and early intervention, the Early On slogan,

“Don’t worry but don’t wait,” was brought up. Some one said there is “Swiss cheese in the well child visit ID’s.”

Steve Lindberg mentioned 211— a phone number people can call for resources.

Regarding Pathways—Mary Swift explained that she doesn’t think that many people understand that there is due process for people who are denied when they first approach Pathways for services.

Mary Swift brought up the Family Support Subsidy available through the state and later the Children’s Waiver Program. (See more on these programs in the follow-up section that follows the minutes.)

Both the benefits of and the limited availability of the Therapeutic Riding Program at Willow Farm were discussed. The program is highly valued in the ASD community, but hard to get into. Last year all slots were filled within two hours of the first day of sign-up. This year there will be fewer slots. It is hard to get enough reliable volunteers and trained therapists to run a big enough program to meet the demand.

Daycare was discussed. As it is now, a daycare that is willing to take on special needs kids is not compensated for the extra work involved. There is a need to help daycares that take on special needs kids get the training needed to help the and there is a need to help these businesses remain profitable. (More on this in the follow-up section.)

Steve Lindberg asked about online resources to help people in rural areas connect with supports. This comment lead to a discussion of the digital divide. Grandparents who are not computer literate are raising many of the kids on the spectrum. Pam Kimble noted that there are some very good resources available online through some of the large national Autism advocacy groups. Selecting the most valuable and useful supports from the plethora of websites offered from a simple Google search can be problematic.

The Marquette Area Autism Spectrum Support Group blog (http://marquetteasdsupport.blogspot.com/) does list some of the national groups that provide useful information to parents and local resources. The blog is run by Ellen Moore, a librarian and a parent, but not a professional in a field related to autism.

Barb Nelson brought up the need for good peer to peer programs that match typically developing peers with kids on the spectrum. Such a program called LINKS has been voted on by the State Board of Education and will hopefully be implemented soon in the schools. It will be hard for teachers to take on yet another new program, but could be very helpful for those ASD students who’s major barriers to future success have to do with social skills. PALS at Pathways was another such program that had been successful but is no longer available.

The discussion turned to those individuals who are transitioning out of the school system at anywhere from age 18-26 to adult living.

There is a movement afoot to get Lakestate Industries to set up a shop in Marquette. They have been a very effective in Escanaba in employing and placing people who would otherwise have barriers to employment.

Tara Gluski said the group homes they offer through Bay Human Services do not have a huge waiting list.

Someone mentioned Kiwanis-Aktion Club—which is run like a regular Kiwanis club by people with disabilities—they do their own fundraising and select causes in the community they wish to support.

Sara Peura explained the state RICC program. RICC stands for Regional Interagency Consumer Committee. There are over 30 RICC’s in the state and 6 RICC’s in the U.P. They are funded through the Michigan Developmental Disabilities Council. (More information at http://www.michigan.gov/mdch/0,4612,7-132-2941_4868_4897-14646--,00.html)

MARESA offers the Transition I and II programs (through age 26)

Pathways has drop in centers and vocational training (ages18-death). Eligibility for voc services comes through being a Pathways Recipient. Anyone (adults) can go to the drop in centers.

Michigan Rehabilitation Services (MRS) offers individuals assistance in entering the workforce.

Disability services at NMU and Student Support Services offer the following to students on the spectrum

- tutors

- advising

- outings

Someone mentioned Bay College in Escanaba has some good supports in place.

Dr, Reissner said that there is a movement amongst colleges in general to develop programs for students on the spectrum.

Salvation Army and Goodwill offer job coaching

Voices for Youth, a program through Lutheran Social Services, gives young adults housing support.

Bay Human Services offers community integration services.

Kane Beauchamp recommended the Office of Financial and Insurance Regulation as a place to lodge a complaint about how insurance coverage is handled. Mary Swift suggested that parents speak with their employers when they see a need to change insurance coverage.

The summit closed with a quick review of the lists of needs in an effort to prioritize. See the lists for those comments.

Thank you everyone who participated in the summit. The resource list is beginning to take shape. If you can think of anything to add or any corrections that need to be made to the information contained herein, please do not hesitate to contact any member of the organizational committee.

Post Summit follow-up to date:

I called the 211 service that Steve Lindberg mentioned, and I asked for resources for autism in the Marquette area. They checked their database and the only listing they had was the Michigan Autism Society, which will hold a workshop in St. Ignace in May. In the two years I’ve been getting their newsletter, this will be their first “above the bridge” event. The operator I spoke with said she’s gotten other calls from people looking for autism resources and was happy to send me a form so the Marquette Area Autism Spectrum Support Group can be part of her database.

Mary Swift sent me a link to the Michigan Dept. of Community Health:

http://www.michigan.gov/mdch/0,4612,7-132-2941_4868_7145---,00.html

It included some great resource information, including specifics on who qualifies for some of the subsidies to parents mentioned at the summit and some other resources not mentioned such as respite for parents who don’t otherwise qualify for their services, Insurance Advocacy for home-based programs, and a program to help children at risk for expulsion from childcare.

Below is some of the information found there:

The Family Support Subsidy (FSS) Program provides financial assistance to families that include a child with severe developmental disabilities. The intent is to help make it possible for children with developmental disabilities to remain with or return to their birth or adoptive families. The program provides a monthly payment of $222.11. Families are able to use this money for special expenses incurred while caring for their child.

Qualifications:

Child must be younger than 18 years of age and live in the family home in Michigan.
The family's most recently filed Michigan income tax form must show a taxable income of $60,000 or less.
The Multidisciplinary Evaluation Team of the local public or intermediate school district must recommend the child for an educational eligibility category of severe cognitive impairment, severe multiple impairment or autism spectrum disorder. Children with autism spectrum disorder must be receiving special education services in a program for students with autism spectrum disorder or in a program for students with severe cognitive impairment or severe multiple impairments.

The Children's Waiver Program (CWP)is a federal entitlement program that provides Medicaid funded home and community-based services to children (under age 18) who are eligible for, and at risk of, placement into an Intermediate Care Facility for the Mentally Retarded (ICF/MR).

Regarding Daycare expulsion: The Michigan Department of Community Health (MDCH), Division of Mental Health Services to Children and Families, has developed an evaluated early childhood mental health consultation approach to providing prevention services that has been implemented for over 11 years. This approach, called Child Care Expulsion Prevention (CCEP) ® has provided services within child care settings serving children birth up to age five. These services have been found to be effective in supporting young children at risk of expulsion to stay in their care setting successfully and to help teachers and families to foster social and emotional growth of all young children within their care.

Minutes for the First Marquette Autism Summit

Local autism services from birth into adulthood

Discussion