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Editor’s Note – The following article was written by Jean Alvarez, Parent Advocate/Trainer for the Autism Society of North Carolina and parent of a young man on the autism spectrum. Jean lives in western NC.

As Local Management Entities (LMEs) move from the old system of service delivery to a network of MCOs and a new waiver – called Innovations, the changes will inevitably cause uncertainty and concern among parents whose children need these services. The Western Highlands Network (including 8 counties in the Asheville area) made the transition in January and the dust has not settled yet. I live and work in the Western Highlands catchment area and based on what I have heard from families and professionals, Innovations is a different playing field and the principal players don’t have all the answers.

My son Jaime has services through the Smoky Mountain LME, soon to be Smoky Mountain Managed Care Organization (MCO) as of July 1. Jaime has a very savvy case manager who walked Jaime’s team through what he called a mock Individual Supports Plan (ISP) meeting on June 12 in preparation for Jaime’s transition to Innovations. Jaime has an August birthday which means his annual plan falls due in the middle of the transition, something which heightened my anxiety. I had been dreading these monumental changes for months and found it very helpful to go through a practice session prior to the transition. The following information is based on what I learned at this meeting and it is intended to help parents be proactive in preventing their child’s needs from becoming someone else’s dropped ball.

Changes in terms:

• Local Management Entity (LME) is now Managed Care Organization (MCO)
• PCP (person centered plan) changes to ISP (Individual Support Plan)
• Person Centered Meeting is now ISP meeting

Other changes:

• Case managers change as well: Under Innovations Care Coordinators work for the MCOs. – Care Coordinators will NOT be the same as case managers and families have to understand this. Care Coordinators are responsible for the plans and meetings. If your child lives outside of the home (Group Home, AFL) or if a person’s parent provides services they need to be seen monthly.
• Coordinators (Qs) with the Providers, such as ASNC, will basically stay the same but will have additional responsibilities
• Community Guide – a new service that can help families navigate the changes as well as help with other areas of need.
• People receiving state funded services may/may not have a Care Coordinator. In some MCOs responsibilities for state funded services have been passed on to the provider coordinators (Qs).

Suggestions for Parents

Case Management is gone now and depending on the MCO, parents may have to advocate for Community Guide service for help navigating the new array of supports. One way to advocate for Community Guide is to emphasize that if any of your child’s services are lost in this process it threatens his/her health and safety. Here is an example:

If an adult was successfully living and working in their community with necessary supports and the new ISP included a reduction in services, this is how it could impact their health and safety. If they only received 3 days per week of supported employment instead of five and did not have a trained job coach with them, what would happen if they became overwhelmed and bolted from the job site? This person would be alone in a city without the judgment and skills to keep themselves safe. In addition to being at risk for exploitation she/he would lose their job. Without a consistent schedule outside of their group home five days a week he/she would also lose their residential placement which would put them at risk for institutionalization.

I realize that this example is only relevant to parents of adults and there are many parents with younger children transitioning to the waiver. Keep in mind that Community Guide is a service to help them navigate all these changes and could help them learn how to insure that their child’s needs are still met by Innovations.

The Care Coordinators are brand new people who have huge case loads. It is very likely that they will not have time to read the background information and will not know your child. Parents will have to plan to educate this person on their child and the need for the services they are asking for.

In some cases Care Coordinators have been telling parents what services they can have. Parents have to be sure to ask for the services their child NEEDS. This is not the Care Coordinator’s call, they submit the plan for approval or denial but the team determines what needs to be in the plan.

If a plan is denied there is an appeal process.

Some elements of the plan have stayed the same and some have changed so don’t panic if it looks different. However, the plan should still describe your child’s needs and why the support is necessary.

Don’t sign the signature page until you have read the finalized plan. Care coordinators should not ask parents to sign the signature page before the parent has the opportunity to read through the final plan. There have been cases where the final plan was different from what was discussed and agreed upon by the team. The care coordinator had the signature page signed and did not submit the plan that the team agreed on.

There may be differences from MCO to MCO. Stay informed, ask questions, and advocate for your child.

The Summer Spectrum (arriving in mailboxes and online in early August) will also include information about the transition to Managed Care and Medicaid Services. Meanwhile if you have questions or concerns, visit the ASNC Calendar of Events to see whether there is a workshop on this topic near you or contact your ASNC regional Parent Advocate/Trainer.

Tags: Asperger's Syndrome, autism asperger parenting tips, autism Medicaid Services, autism nc, autism society of NC, Autism Society of North Carolina, autism support, NC Medicaid Waiver