A look back at a remarkable year

looking-backA few highlights from 2013

2013 was a busy year in the autism community. We witnessed the changeover in statewide service delivery from Local Management Entities (LMEs) to Managed Care Organizations (MCOs). Issues that had stalled for years with the legislature moved forward, but not all the way into law. And more families learned that they have a member on the autism spectrum. All in all, it was a significant year, and we would like to highlight just a few items as the year draws to a close.

Medicaid Waiver Transition
Many families receive funding for services through Medicaid in our state. Many more are eligible and are waiting for services. The first quarter of the year saw a change in service delivery that consolidated 22 LMEs down to 10 MCOs. The transition had some rough spots, and the Autism Society of North Carolina (ASNC) continues to work with MCO staff and families to advocate for improvements to the system and expansion of services to more individuals with autism.

Autism Insurance (House Bill 498)
For over five years, ASNC has worked with parents, professionals, and a coalition of other autism organizations to educate lawmakers about the impact that insurance coverage for autism would have in our state. These efforts resulted in an incredible 48 hours of activity in May. During those 48 hours, HB 498 was discussed and approved by the House Insurance Committee and the Appropriations Committee, and then passed the full House by a 105-7 margin. This moved the bill to the NC Senate, where if approved it would proceed to the governor. As the legislative session drew to a close, HB 498 was not given a hearing by the Senate, but it remains alive, and we expect the Senate to take this up at the start of the 2014 short session.

Expanding Services
Along with the waiver transition, many providers of services either scaled back their caseload, or in some cases, ceased operations. The Autism Society of North Carolina has worked to continue high-quality services and expand the regions in which we are able to offer them. These efforts included hiring a Services Coordinator and opening a new office in Charlotte. Now families in that area of the state will be able to access additional services from the organization. View the Autism Society of North Carolina services offices here.

Connecting with and Helping Self-Advocates and Families
This is the core of what we do, and during 2013, the Autism Society of North Carolina assisted thousands of individuals on the autism spectrum and their families through our Autism Resource Specialists, chapters, and support groups. Autism Resource Specialists (formerly Parent Advocates) cover all 100 counties and assist with information and referral, school issues, parent training, and community education. If you have not tapped into their expertise, please make sure to connect in 2014.

Celebrating and Accepting
On April 2, more than 500 people traveled to Camp Royall to celebrate World Autism Awareness Day (WAAD). This was the first ASNC attempt to have a public event in recognition of this day, and we were blown away by the response. Families traveled from as far away as Charlotte, Asheville, and the coast to enjoy fellowship, food, and fun with the variety of activities the camp offers. Camp Royall not only hosted WAAD, but also provided summer camp for over 350 individuals and served 900 more during year-round programming. 2013 marked the 42nd consecutive year that ASNC has offered a summer camp, the longest running summer camp program for individuals with ASD in the nation. Our community also celebrated awareness and acceptance at our Run/Walk for Autism events throughout the state. From the mountains to the sea, thousands of families and community members came together to walk, run, volunteer, and raise money to support each other and ASNC. More than $500,000 was raised through these events – a new record. What an accomplishment.

Collaboration and Community
Everything we do is related to providing support to and increasing opportunities that enhance the lives of individuals on the autism spectrum and their families. These principles guided us when the founders started the organization almost 44 years ago, and they still guide us today. Parent and professional collaboration is the key to promoting understanding and acceptance, and for your support – whether you have donated to the organization, written an email to a legislator, shared our website address or phone number with a family in need, or volunteered your time – we say THANK YOU. All of the above would not have happened without your involvement.

Best wishes for the New Year!

David Laxton
Director of Communications

Medicaid Waiver (CAP IDD) Changes Take Effect Soon – What you need to know

Editor’s Note – The following update was compiled and vetted by Autism Society of North Carolina Senior Director of Quality and Programs Kerri Erb and Director of Governmental Relations Jennifer Mahan. Both these ASNC staff have been following changes to Medicaid Waiver services for quite some time.

Last year, the State of North Carolina submitted applications to renew its Community Alternatives Program (CAP) for people with intellectual and developmental disabilities (IDD), known as the CAP IDD or CAP MRDD waiver to the Federal government. This waiver program allows people who are eligible to receive Medicaid services through an intermediate care facility (ICF MR) to instead utilize those services in home and community settings. This community-based waiver has to be re-approved every 3-5 years.

North Carolina is in the middle of transitioning Medicaid services for people with Intellectual and Developmental Disabilities to a managed care model under another waiver called a 1915 b/c waiver (which for people with IDD is called “Innovations”). Given this transition to managed care, North Carolina officials asked for the current CAP IDD community based waiver to be extended several times. The state was hoping that it could transition to managed care Innovations at the same time so that those on CAP would not have to change services from their current CAP program, to a new CAP waiver program and then to Innovations.

North Carolina’s final extension on its current CAP IDD waiver has ended and the new waiver has been approved to start today, October 1, 2012. The state will transition participants to the new CAP IDD waiver starting this month. People on CAP IDD waivers and their families should not worry; CAP IDD services will continue after October 1. The NC Department of Health and Human Services, who are in change of Medicaid and CAP IDD, are working on the implementation plan for CAP IDD that will give direction to Local Management Entities, case managers, families and providers on what needs to be done and when. This plan may not be finalized until later this week.

As soon as Autism Society of North Carolina has more information about the implementation plan we will share it with families, staff and the public. Below are some of the changes in the new CAP IDD waiver that we have reported previously.

The Biggest Changes in the CAP IDD Waiver:

  •  There will be a 129 hour per month limitation on habilitation hours for adults and children.
  • “Habilitation” includes Day Supports, Supported Employment, Long Term Vocational Supports and Home and Community Supports.
  • The 129 hour limit is inclusive of all these habilitation services; the total number of hours of these services cannot exceed 129 hours.
  • The hour limit does not include habilitation hours provided in Residential Supports and/or Home Supports.
  • Habilitation hours for children in school will be reduced to 20 hours per week. This includes any week school is in session, even for one day, even if the child is not in school that particular week.
  • The 129 hour limit is a monthly limit; it is not a yearly average of habilitation hours.
  • Enhanced Personal Care and Enhanced Respite will be restricted to authorizations only for medical reasons (not behavioral).
  • Home Supports will no longer be a service under the 2011 CAP I/DD waiver. Personal Care and Home and Community Supports may be used instead of Home Supports. Hours restrictions that apply to rest of waiver apply to those transitioning out of Home Supports.
  • Family members can continue to provide Home and Community Supports and Personal Care as they did under Home Supports. Other services under the CAP I/DD Waiver, such as Day Supports and Respite, cannot be provided by family members.

For more information go to The North Carolina Department of Health and Human Services web page for the CAP waiver and see “Overview of New CAP Waiver” near the bottom.

To contact Kerri Erb email kerb@autismsociety-nc.org or call 919 865 5053. To reach Jennifer Mahan email jmahan@autismsociety-nc.org or call 919 865 5068.

Tips for Parents Transitioning to the Innovations Waiver

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.


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