The Autism Society of America has given a conservative estimate of $3-$6 million as the cost of caring for one person with autism across his/her lifetime. At the same time, rising costs and changes in health care are coming almost every day, making it more important than ever for families to connect their loved ones to available supports and services.
Families who have already connected with their Local Management Entities/Managed Care Organizations (LME/MCOs) are finding the waitlists for services to be years long. This can be discouraging for many who are finding their child’s needs becoming more extensive with limited supports available.
One of the questions I have received frequently as an Autism Resource Specialist is this: “If the waitlist is so long, is it really important to apply for services at all? It seems like my child may almost be an adult before a slot will even become available!” While I can certainly see this point of concern and frustration, my answer to this question is always the same: “YES, it is more important than ever to connect as early as possible.”
We can’t ignore the facts: The unfortunate truth is that every LME/MCO in North Carolina does have an extremely long waitlist for Innovations waiver services, and this can make a family wonder whether the effort of applying is even worth it over the long term. However, families should consider the current funding of services as a “census” of sorts. Many of the dollars designated from the federal government to North Carolina to cover Medicaid services come on the basis of the number of individuals living with disability in our state. A family with a 5-year-old child on the spectrum may fill out paperwork for eligibility and then be placed on the Innovations waiver waitlist or the “Registry of Unmet Needs” for their specific MCO. They may be told that their child will be 12-15 years old before an Innovations waiver slot becomes available; however, they have in fact “registered” their child as a person with need. By doing that, they have in effect opened up a documented need for additional funding for their catchment area as it becomes available.
In addition, families also should consider that there are some services currently available to individuals who have been deemed eligible for services or are currently listed on the Registry of Unmet Needs/waitlist with their MCO. A limited number of funds may be available through your MCO to assist with support services. These are state-funded services sometimes known as IPRS (Integrated Payment and Reporting System funds) or B3 funds. For these services, the person is screened both for clinical and financial need. B3 services are only available to people who qualify for Medicaid. IPRS services apply a similar screening for income eligibility. As Autism Resource Specialists, we always advise families when contacting the MCO access line not only to inquire about Innovations Waiver services, but also to ask about the services that are available to their child while on the Registry of Unmet Needs. B3 respite can provide a limited number of hours for a break to the caregiver each month, which can be an invaluable support over time.
Tips for families awaiting services
Check in with the LME/MCO regularly to see where your child is on the waitlist for Innovations waiver services. This is especially important if there have been any changes in your child’s needs, contact information, address, etc. Providing additional documentation/evaluations/medical updates may help document a greater level of need, and may move your child up the list for services. But in North Carolina, access to IDD waiver support services and other autism services are only partly based on severity of need, and many services have waiting lists regardless of great levels of need. Families who may find themselves in a behavioral crisis with their child may also find that the MCO has some emergency funds/slots that can help in some cases. At the least, they may be able to access the services of a care coordinator for a temporary amount of time. Care coordinators have replaced individual case managers for waiver recipients, but they may be assigned to help other families to access services as needed. We would encourage these check-ins quarterly, twice a year, or at minimum, once a year.
Investigate some alternative options. As mentioned above, ask about obtaining B3 respite and any other available state-funded services currently available. Early and Periodic Screening, Diagnostic and Treatment (EPSDT) is a Medicaid-funded child health program that can cover services such as diagnostic evaluations, behavioral assessments with development of treatment plans, and delivery of research-based intensive behavioral health treatments such as Applied Behavior Analysis (ABA). EPSDT is available to children up to the age of 21 who are Medicaid-eligible. Families whose children are Medicaid-eligible or already receiving Medicaid can contact their LME/MCO access line directly to request help with accessing this treatment for their child. To locate your MCO, search the online directory.
Connect with your local ASNC Chapter. Many of our local chapters provide presentations or trainings which may be an extra means of support.
Contact your local Autism Resource Specialist. We have access to local resources and may know of faith-based communities or other community organizations that are providing various services to individuals/ families for free or by means of private pay or a sliding-fee scale.
Contact your legislators. The importance of sharing your story with both state and government officials cannot be underestimated! In fact, the funding for Innovations waiver slots has to be approved from our General Assembly. Our beautiful Camp Royall facility is shining evidence that great things can happen when families get together and share the needs of their children with those who can vote on additional funding and programming for our loved ones across the state Not sure how to advocate? We have tips and a toolkit on our website.
Educate yourself continually on the changing services definitions. ASNC has a Director of Public Policy, Jennifer Mahan, who works continually to help keep families updated on changing services definitions and policies. Look for frequent updates on our blog whenever important changes are occurring, and become involved where you can!
Navigating services can indeed be a maze, but families are not alone! All of the Autism Resource Specialists at the Autism Society of North Carolina are parents of children with autism themselves. We are always happy to walk through the process with families and to share knowledge and resources whenever we can. Finally, don’t forget that one very invaluable resource on this topic is the Accessing Services toolkit on our website.
Wanda Curley, an Autism Resource Specialist in the Triad office, can be reached at firstname.lastname@example.org.
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