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The WI Dept. of Health & Family Services (DHFS) is in the process of implementing significant changes related to the provision of intensive in-home autism services. The Medicaid home and community-based service waiver (Children’s Long Term Support - CLTS), which includes provisions for autism services, has been submitted to the federal Centers for Medicare & Medicaid Services (CMS).

At the Sept. 15th meeting of the Autism Coalition1, discussion included: 1) status of waiver, 2) continued Coalition support for waiver provisions, 3) concerns/observations about key stages of transition to the waiver; 4) post-intensive services, and 5) next steps. DHFS staff shared this information about the waiver:

• DHFS will post waiver updates on its website: www.dhfs.state.wi.us (Search – autism)
• Timeline:
• 6/19/03 – DHFS submitted CLTS waiver to CMS. (90-day timeline for review= 9/19).
• 9/12/03 – CMS new list of waiver questions sent to DHFS, which “stops clock” and essentially starts another 90 day timeline for CMS waiver approval (i.e., 12/12/03).
• 10/1/03 – counties’ deadline to inform DHFS if will implement waiver (if not, DHFS will administer the waiver through a contract with a provider in the area to coordinate waiver);
as of 9/1, only 5 counties had agreed to implement the waiver. Deadline was going to be extended till 11/1/03.
• Implementation is expected to be done in phases, with smaller counties being able to implement the waiver within the first month after CMS approval, larger counties may implement intensive children in a first phase and post-intensive in second phase.
• Services will not change to waiver without the family’s knowledge; someone will meet with family first to develop a service plan.
• $96/day average cost of intensive waiver slot; $28/day average cost of post-intensive slot.

The Coalition reached informal agreement with DHFS staff present at the meeting and sent a letter of request to DHFS 10/2/03 regarding:

• DHFS agreed to send email updates, twice monthly, to Autism Coalition contact (Liz Hecht, who will forward to full Coalition), until initial implementation of waiver is complete.
• DHFS agreed to answer questions (within 10 days) submitted by families and providers to Autism Coalition contact (Michelle Sturz, msturz@charter.net ) to ensure availability of timely, accurate information. For most current Q&A: http://www.asw4autism.org/Inhome/ihapqa.htm
• DHFS agreed to send a formal communication to counties ASAP clarifying the description of post-intensive services, in particular making it clear that in-home behavioral treatment is one of the options for families to access as a post-intensive service through the waiver.
• DHFS agreed to send a formal communication to counties clarifying the state’s policy regarding “holding families harmless”, i.e., if parents are receiving services through their county prior to going to the waiver, under what circumstances are the counties allowed (or not allowed) to discontinue those services.
• Coalition requesting DHFS to dialogue with existing in-home autism providers to ascertain: a) which of these providers is willing to provide post-intensive services, b) what technical assistance these providers need from the state, and c) if there is not an adequate network for the provision of post-intensive services, that DHFS develop a strategy to expand the network of providers.
• DHFS agreed to inform the Coalition of the “pattern” of decisions made related to the 40 appeals that have been filed with the state since 7/1/03 regarding denials of service to children with autism under the Medicaid card.
• DHFS agreed to clarify (soon) what criteria will be used to make decisions regarding exceptions to the 3-year limit for intensive services. The Coalition requested that DHFS first develop DRAFT criteria and a DRAFT of the process and provide an opportunity for parents, advocates, and providers to comment on the DRAFTS before they are finalized.
• Coalition requesting DHFS to conduct a fiscal analysis to estimate the cost to the state of allowing children who began receiving services after their 8th birthday, but who have not yet received 3 years of service, to complete 3 years of intensive service. This information would help the Coalition determine whether to raise this issue in the January legislative session.

DFHS staff provided information about the waiver at the Sept. 26th ASW Fall Conference:

• The longer the waiver approval takes, more quickly the $26.5 Million state budget funds will be used up, reducing amount available for rest of biennium budget years.
• New slots (children not currently served) will have 1 month wait period; priority in order received.
• Family cost-share not expected to start until early 2004.
• New DHFS form, “Individual Service Plan – MA Waivers,” will be used for each child to outline expected outcomes and related supports/present level of functioning/measure for each outcome.
• Intensive autism waiver services proposed to CMS (Appendix B-1, SPC 512), included:
• Independent evaluation required before starting services (Note: children already receiving services will automatically move to waiver without this evaluation.)
• Services must start before child is 8 and be limited to 3 years (Note: DHFS criteria for variances not available yet; though DHFS noted that few will be granted, as each variance granted would use one of the 250 slots for new children eligible for intensive therapy)
• Intensive levels of service are defined 25-35 hours of face-to-face contacts/week per Individual Service Plan for child.
• Post-intensive phase: after 3 years of intensive services, or if not making progress towards outcomes in Individual Service Plan, child will transition to other waiver services
• When receiving intensive autism services phase, no access to other home & community-based waiver services.
• Only services not reimbursable under State Medicaid Plan reimbursable with waiver funds.
• Cost of travel time may be included in rate paid to providers
.
• Standards for personnel described (Note: one change is that Line Staff requirements changed – 18 years, high school graduate, 30 hours of direct supervised experience in use of intensive autism therapy or 160 hours work with child with ASD in any setting.)
• Other services available under the waiver, post-intensive phase, which may be accessed to age 18:
• Adaptive aids; communication aids; consumer education & training (as, conferences), consumer & family-directed supports; daily living skills training; day services; home modifications; personal emergency response system; respite care; specialized medical & therapeutic supplies; specialized transportation; support & service coordination; supported employment; supportive home care.


• Counseling and therapeutic resources: area which DHFS says can be used for continued intensive therapy, but at a greatly reduced number of hours (i.e., about 7 hours/day).

A provider panel at the ASW Conference discussed their various existing and proposed services under the waiver, including: community-based programs, recreation programs for social skills building, supported home care, in-home SED psychotherapy services, consultation, and ABA training for school staff.

The Legislature also allocated $1.3 Million for a few counties to enroll 90 children ($48.33/slot/day) in 2003 in the new waiver (i.e., not including children eligible for funding by the $26.5 Million being moved from the Medicaid “card” services for in-home therapy into the waiver).

Families for Early Autism Treatment (FEAT), families concerned about the dramatic reduction in services for children receiving autism services, especially post-intensive, is organizing and may be reached at: FEATWI@hotmail.com, 608-325-2518, or FEAT, P.O. Box 45825, Madison, 53744-5825.

The Autism Coalition is also concerned that post-intensive service level is inadequate and will result in expensive out-of-home placements. Other areas of inadequacy include: children starting after 8 and children cut before receiving a full 3 years of intensive service. The Coalition will address the need to seek increased funding through a budget repair bill. For waiver updates, Autism Coalition and ASW Legislative Committee efforts, visit the ASW website: www.asw4autism.org and also join the ASW-Autism e-group: www.asw4autism.org/budget%20surprise.htm.

1 A stakeholder coalition of over 50 organizations/agencies/individuals representing thousands of families, including Autism Society of WI, parents of children with ASD, Survival Coalition of Disability Organizations, WI Coalition for Advocacy, WI Council on Developmental Disabilities, school-related organizations, pediatricians, in-home therapy providers, and disability advocates.

4/22/03

A small group from the Autism Coalition met with DHFS 4/21 (2:30 - 6:15 p.m.) to discuss the response of DHFS to our April 3rd Coalition proposal. DHFS reported that a letter received last week from the Centers for Medicare & Medicaid Services (CMS) indicates that the they feel that the appropriate method for WI to claim federal funds for intensive, in-home services is through a home and community-based services waiver. DHFS must submit a waiver proposal in the next several weeks. In order to craft the waiver to address the assurances requested by the Autism Coalition, this will be a new waiver application, rather than an amendment to an existing waiver. This will mean a minimum of 90 days from the date of submission to approval. The current funding mechanism will continue until the new waiver is available, sometime in September 2003.

The Dept. has reviewed the possible waiver types: Autism Only Waiver, Children's Waiver with Intensive Autism Services available, and a combination of these options as suggested by the Autism Coalition. The Children's Waiver with Intensive Autism Services was the waiver selected by DHFS, as it was determined to be the best vehicle to meet most of the assurances requested by the Coalition in our April 3rd proposal to DHFS.

We "caucused" with our Coalition members to discuss our concerns and agree on our response. We did agree to support a Children's Waiver with Intensive Autism Services included as part of the waiver. The Autism Coalition request for $26.5M GPR funding was submitted to the Governor by DHFS on 4/22. The Governor plans to brief key legislators within the next few days about his revised budget revisions and the waiver proposal related to this issue.

The new Children's Waiver would be available statewide, administered by all counties, and we have been assured that the waiver application to CMS would at least include the following components:

1. continuation of intensive levels of services (25-35 hours per week) for children for three years
2. a rotating pool of slots so that newly identified children, through seven years of age, will be able to access services without waiting (expected that about 250 newly identified children could receive intensive services in each of the next 4 years)
3. variety of therapy models available (i.e., Greenspan, Lovaas, etc.)
4. state set standards for service provider certification
5. long term support for children who need it after 3 years of intensive services
6. implementation of a family cost-sharing system (based on federal poverty levels)
7. an process for exceptions to the age and length of service
8. criteria developed for exiting intensive levels of service

We have a meeting at 8 a.m. Wed. with Sen. Alberta Darling and other JFC members and will be sharing details about our meeting and urging their support - i.e., so that they don't cut the $26.5 M GPR amount any further.... since, with all of our work on this issue, we feel that it is at absolute bare bones now.

Nelsinia Rojas, representing the Coalition, will speak on the issue at the People Can't Wait Rally, 4/23, 1:55 - 2 p.m. ....in the "People Can't Wait Speak Out" room (400 SE). Please join us there if you can to show support.

We expressed many concerns during our 4/21 meeting with DHFS, as a county-administered waiver system is certainly not ideal. But we all know that, with the state budget crisis, we have been told by all not to expect "services as usual" . We obviously still have much work to do on trying to craft a comprehensive waiver that meets the needs of our children. This is not an ideal situation. But, under the circumstances, the group felt that we had to move forward or be left behind without a voice in the process. Sinnika McCabe, Director of the Division of Disability and Elder Services, indicated that she hoped to continue working with the Coalition in years to come, to continue to use the Coalition to monitor the quality of the waiver, etc.

3/24/03

The Autism Coalition (new title for big stakeholder group) met in Madison, 3/21, 1:30 - 5:30 p.m. Areas covered:

1. Reviewed the 3/19 DHFS Response Paper (to our 3/11 Proposal) - following problems stuck out:
   • most problematic was our discovery of DHFS intent to purge nearly 500 kids from services, before creating "slots" for the waiver; the 200-300 slots to be added annually would have started from 500 rather than from 1100!
   • response ignored the first 2 critical points of our 3/11 Proposal - asking for further investigation of continued use of Healthcheck and possible legal challenge to CMS related to "habilitative/rehabilitative/progress, etc." aspect.
   • DHFS recommendation to move clinical-level decision-making to an outside entity
   • DHFS response includes lowered therapy hours from our proposal
   • DHFS ends therapy abruptly after 3 1/2 years, rather than our proposal for intensive therapy for 3-4 years at 30-35 hours/wk, then a step down level of 15 hours/wk for an indefinite amount of time (ie, as needed per individual), and then a transition phase to community support
   • DHFS included age limit of 7 to start program without option to appeal based on individual circumstance that our proposal had included
   • DHFS changed to a 25% cut in line therapy reimbursement rather than the 10% cut we proposed
   • and a bunch of other things that did not fly well with the group!
   • 
     
2. Discussed our discovery of March CMS letters to DHFS.
   • 3/7 letter from Glenn Stanton, CMS Deputy Director - "The apparent misunderstanding that CMS would not pay for in-home autism treatment services for children may have resulted from communications related to a proposed amendment to the State's Medicaid Plan, which WI subsequently withdrew....." "...we believe that these services can be included in the State Medicaid plan and be provided to children through the EPSDT benefit." "...the State is obligated...to provide all medically necessary in-home autism treatment services required by a child under the EPSDT program."
   • 3/14 letter from Stanton - "Based upon our conversation [today]....please consider my March 7, 2003 letter preliminary thoughts based upon our limited knowledge of the service at that time, not a final CMS position. I look forward to our continued dialogue on this issue."
   • Implications - Group strongly in favor of revamping original Autism Coalition proposal as a result.
   • 
     
3. 3/21 DHFS Paper summarizing their recent interactions with CMS.
   Summary Paper was developed in response to phone call from Coalition indicating that Autism Coalition members, parents and others who have learned about these two letters are angry & feeling deceived and includes the following points -
   • DHFS indicates that they did not regard the CMS latter dated 3/7 and received 3/13 as definitive on the issue of availability of federal Medicaid funding for intensive in-home autism treatment services because it did not appear to be consistent with CMS's prior position relative to these services.
   • In approving the Maryland Autism HCB Waiver, which took effect 7/1/01, CMS accepted MD's categorization of virtually identical services under the rubric "habilitation" services.
   • "Habilitation services" are eligible for federal Medicaid funding only if provided in an ICR/MR or in the community either as therapy services or under a HCB waiver.
   • Because the autism services covered by WI Medicaid are not provided in an ICF/MR or under an HCB waiver and do not qualify as therapy services, CMS's statement in its 3/7 letter about "State..obligated….medically necessary" appeared inconsistent with its recognition of these services as "habilitation services" under the Maryland Autism Waiver.
   • When DHFS altered CMS to this apparent inconsistency, CMS sent DHFS another letter dated 3/14 requesting a detailed description of in-home autism services covered by WI Medicaid, to the end that CMS would be "better positioned to respond to the relationship between the service & EPSDT." CMS' 3/14 letter concluded by asking DHFS to consider the 3/7 letter "preliminary thoughts based upon our limited knowledge of the service at that time."
   • 
     
4. Report from small group working on 3/13 to research and outline preliminary details of ASD Personal Care Program.
   • Program would be a new Medicaid card service.
   • DHFS originally asked the Coalition to suggest ideas for lower cost alternatives for children to access once they were done with the most intensive portion of in-home autism therapy (or other kids with autism, who had not had in-home therapy, but were needing to access this type of service)
   • The group suggested to DHFS that an ASD Personal Care Program might be a good option & DHFS actually thought the idea of a new card service was a possibility and asked the Coalition to work out the details.
   • The small group suggested that the Program would be delivered by an "ASD Personal Care Trainer", supervised by a Senior Therapist & Psychologist - in home, in the community, etc.
   • Covered services would primarily aim at Skill-Building, including: Functional Communication Skills, Social Integration Skills, Behavior Management, Increasing Independent Living Skills, Crisis Care (extreme safety risk, aggression, self injury) Assessment & temporary amended treatment plan to avoid prolonged out of home placement
   • Eligibility would be the same as the Home Care Program (age & duration)
   • 
     
5. Revision of Autism Coalition Proposal - to be shared with DHFS this coming week:
   • We decided to reject a waiver
   • We will push for continued funding under the current funding mechanism (ESDPT/Healthcheck) with no slots and no caps on number of years of therapy
   • We will recommend creation of the ASD Personal Care Program as a Medicaid card service (to create a less intensive tier of services for kids who no longer need intensive therapy but who still need some kind of support and help).
   • We will continue to work with DHFS on more cost containment ideas.

3/11/03

We met with DHFS on Tuesday, 3/11, 4:15 - 5:45 p.m., to present our proposal, entitled "Recommended Modification of the Governor's Proposal for the Future of Autism-In Home Services in Wisconsin," developed by our large stakeholder group in the past few weeks.

Diane Welsch, Executive Assistant to Helene Nelson, DHFS Secretary, and five other representatives from DHFS and the Department of Health Care Financing attended the meeting. Our group included: Jan Serak, Chair, ASW Leg. Committee; Lynn Breedlove, Co-Chair Survival Coalition & ED of WI Coalition for Advocacy; Liz Hecht, Issue Leader, Survival Coalition's Families Initiative; Andy Paulson, Provider, IDS; Chris Wiebusch, Provider, ABN; Amy Boyle, parent; and Jonathan Coyle, parent.

We described our proposal development process, including that the document reflects the work of a broad stakeholder group of around 37 people (parents - younger/older children - receiving services currently/formerly/never), providers (large/small # kids receiving in-home services), staff of providers, pediatricians, and disability advocates. We noted that 13 organizations have endorsed the concepts contained in the proposal so far.

We were very pleased to hear that, since our Feb. 27th meeting, that DHFS and DHCF have done more research on this issue. DHFS also has altered their website to add: Governor Doyle has directed DHFS to reevaluate this proposal. DHFS staff are currently examining Medicaid rules and talking to parents and advocates to develop an alternative proposal. www.dhfs.state.wi.us/aboutDHFS/osf/summarypapers/autism.pdf

We reviewed the nine "Key Principles to Guide State Policy on This Issue," which our group developed. We also reviewed the five substantive parts of our proposal, including: suggestions for further legal investigation, information relating to an autism waiver, suggestions for several immediate cost containment measures, suggestions for additional promising cost containment ideas needing more research, and suggested areas for further legal analysis. The detail of each of these 5 points was included in our proposal, and was discussed at length during the meeting. We also noted to the group that our proposal supports the idea of a Legislative Council Study to plan for the long range future of these and other services in Wisconsin, especially in the light of the rapidly increasing incidence of autism across the U.S. We concluded with a discussion about the possible cost (all funds) in the governor's budget to fund this proposal.

We will not be able to share the details of this proposal yet - as we would like to give DHFS an opportunity to research our proposal and request clarification if needed from our group.

We were very pleased to find that the Dept. has already spent much time researching this issue. Diane Welsch mentioned that the Department has been receiving many, many phone calls and letters from the autism community. She indicated that the Department is absolutely committed to making this happen. They will now develop a DHFS Options Paper in the next week. We will have the large stakeholder group review the Paper. We will meet with the Department after our large stakeholder group has had the opportunity to review it. It was very exciting for us to learn of their eagerness to work on a new plan!!

Diane further noted that she is aware that the Governor's office, too, has received many, many calls, letters and in-person visits. She noted that the Governor recently has been sending a letter of response to interested constituents noting that he, too, is very interested in receiving a revised plan from DHFS.

So - both the Governor and DHFS have heard that this funding is a priority for us. They have gotten your messages loud and clear.

At this time, information about in-home therapy will be of most interest to your own legislators and Joint Finance Committee members.

3/7/03

The ASW Legislative Committee met again on Friday, March 7th, 1:00 - 5:30 p.m., with the big "Stakeholder Group" that has been working on the "Intensive In-Home Therapy" budget cut issue. The stakeholder group included about 30 people representing diverse perspectives - parents of young/older children currently/formerly receiving services, parents of older children who have not received services, providers & staff, autism advocates, advocates from other disability groups (including the WI Council on Developmental Disabilities, WI Coalition for Advocacy, Survival Coalition). Lynn Breedlove, Co-Chair of the Survival Coalition (a broad disability coalition of around 40 disability groups in WI), again did a fabulous job of facilitating the meeting. The group worked to refine a draft proposal which had been put together during our previous "large" and "small" Stakeholder Group working meetings. After much work, we feel that we have come up with a very thoughtful proposal which addresses the needs of our children with autism spectrum disorder in a comprehensive manner. The work of this group will be typed up into a Summary of our Stakeholder Workgroup Recommendations. We will share it with representatives of the Dept. of Health & Family Services on Tuesday, 3/11 at 4:30 p.m. A small group, selected by our big Stakeholder Group, will present the proposal to DHFS (Jan Serak, ASW Leg Chair; Lynn Breedlove, WCA; Andy Paulson & Chris Wiebusch, providers; Jonathan Cope & Amy Boyle, parents; Liz Hecht, Chair of Survival Coalition's Committee on Children's Long Term Care Redesign). The Recommendations have been "endorsed in concept" by the full stakeholder group.

While we are not able to share the details of the Summary with you until after we present it to DHFS, since we would like them to be able to see it first, we can share some information. The Summary includes a list of key principles that the group agreed on to guide state policy on this issue, recommendations relating to a new Medicaid Waiver, cost containment strategies, and future planning strategies. DHFS was very interested in what ideas our group could develop, so we believe that they will be open to our ideas. We hope to get their feedback after their review of the Summary document. We will meet with the larger Stakeholder Workgroup when we have an idea of next steps.

It appears that the many calls, letters, in-person visits to your legislators, media spots, etc. with personal impact stories has certainly raised this issue high on the radar screen of many.

3/6/03

A small group of 10 stakeholders met again Tues, March 4 in Madison for 3 hours to try to pull together all of the ideas and information which were discussed by the larger group that met on Monday for nearly 5 hours. This group included: ASW Leg Committee representatives, representatives of providers, parents, and Survival Coalition leaders. The large stakeholder group will meet on Friday this week for further discussion. We hope to meet early next week with the Dept. of Health & Family Services to share the final ideas which result from this large group.

3/3/03

A large meeting of about 40 stakeholders was held Monday, March 3 in Madison to explore ways to restore funding for the in-home intensive therapy program and to begin to define the parameters of an intensive program for children with autism. The meeting included representatives from the DHFS, the Division of Financing Administration, the ASW Legislative Committee, Survival Coalition advocates, and invited parents of the children with autism (currently/formerly receiving in-home therapy and others whose children have not received services) and respected professionals (physicians, RNs, etc.) in the area of autism.

3/2/03

The ASW Legislative Committee and Survival Coalition leaders met with WI Department of Health & Family Services (DHFS) Secretary Helene Nelson's Executive Assistant, Diane Welsh, other DHFS staff and a staff member from the Governor's office on Thursday, February 27 for several hours. Advocates emphasized the value of the program for children with autism. The department shared data about the numbers of children served and the increases in funding since 1994. Possible ways to restructure the services to continue to be eligible for the federal Medicaid funds were discussed, including efforts to secure an appropriate Home and Community Based Waiver.

The DHFS and Governor's staff told us they are very eager to be responsive to all the pressure they've been feeling on this issue (letters and phone calls from hundreds of parents, providers, therapists, school personnel, physicians, legislators, and many others).

Diane Welsh expressed the willingness of the department and Governor to work with the advocates to structure a Medicaid reimbursement that would restore some, but maybe not all funding for these services, in an effort to serve the needs of the children while meeting the fiscal and other concerns of the Governor and the DHFS.

A broader meeting is scheduled for Monday, March 3 to explore ways to restore funding for this program and to begin to define the parameters of an intensive program for children with autism. The meeting will include representatives from the DHFS, the ASW Legislative Committee, Survival Coalition advocates, and invited parents of the children in the programs and respected professionals in the area of autism.

• ASW's priority is full restoration of the state's $8,500,000 commitment to funding these services. In keeping with the Autism Society of America Options Policy regarding interventions, we will strongly oppose attempts to place restrictions on access to the program based on child characteristics (such as age or IQ) or based on the type of therapy provided (ABA vs. "floortime", etc.). ASW feels that the more alternatives people with autism have to select from, the better.

• It is clear that things will definitely change, even if the state restores all funding. The federal Center for Medicaid Services has informed the state that the way DHFS is currently using Medicaid funds to pay for in-home services is not in compliance with federal regulations. In order to continue using Medicaid to pay for these services, the state indicates that they believe they will have to apply to the federal government for a special waiver. We are working VERY hard to learn more about this and will keep you updated as we figure out what the implications of this are.

• We are doing our best to post information on the ASW website and this listserve. Events are unfolding at a very rapid pace and we are all volunteers trying to fit this advocacy work into our busy lives. Please forgive us if our information updates have not been as timely as you would wish.

• We are working on a Fact Sheet about autism and in-home services that will be posted on the ASW website by the end of the week. It will be something you can print out, refer to, and even include if you plan to send letters to representatives or when contacting media. Information about how to find key addresses and phone numbers is included on our website - as, if you plan to contact your district representatives, the co-chairs of the Joint Finance Committee, and the Governor's office.
  

It is amazing what an impact just a weeks worth of contacts from the autism community has had!

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