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The NCDHHS website defines the NC Innovations Waiver:  The Medicaid Innovations Waiver help Individuals with Intellectual or Developmental Disabilities (I/DD) live a more independent lifestyle. The LME/MCO receives a set amount of money (capitation) each year that is used to help people get I/DD services.  Contact your LME/MCO to find out how to apply.  

One of the first actions to take when you obtain a diagnosis is to apply for an Innovations Waiver. This cannot be stressed enough: there is a waitlist for the Waiver, which varies by county, but could entail waiting up to 15 years before receiving a Waiver.  Even if you think you may not want or need services for your child, please apply ASAP; you can always reject the Waiver when it is offered.  As of 2018, there were about 12,000 individuals with Waivers in NC and about 11,000 on the Registry of Unmet Needs (waitlist).  Please note that while Medicaid funds the Waiver,  it is not necessary to have Medicaid when you apply for an Innovations Waiver. 

(b)(3) Services are extra IDD and behavioral health supports for people with Medicaid. They help people with a variety of diagnoses remain in their homes and communities.  Individuals on the Registry may be eligible for these services. Contact your LME/MCO for information about which services are available.

 August 2018   If your loved one has a waiver:

The NC Department of Health and Human Services has issued a new communication bulletin that should make it easier for people who have the Innovations Waiver to get the services they need.

This bulletin is the result of Disability Rights NC’s complaint against the State of North Carolina over the use of budget caps to limit services. The bulletin went to all of the state's Local Management Entities/Managed Care Organizations (LME/MCOs) and clarifies these important principles:

  1. The amount of supports an individual gets must be based on medical necessity, not their assigned budget.
  2. Employees with the LME/MCOs must encourage families to request all services they believe they need, regardless of their SIS score or assigned budget.
  3. When deciding whether to approve a request for services, the LME/MCO must only consider the needs of the individual—not the assigned budget or the services given to other participants who have similar SIS scores or the same budget category.

This guidance comes as a result of the LS v. Wos settlement agreement. Disability Rights NC filed this lawsuit in 2011, challenging how the Innovations Waiver was being implemented. Some of the LME/MCOs failed to comply with the terms of the settlement agreement, so in December 2017, we filed another complaint. The new communication bulletin is in response to that complaint.

Eligibility for Waiver  

This is the wording from the Clinical Coverage Policy 8e. This language begins on page 4.  While this is important to read, do not let your interpretation of what it means deter you.  APPLY and APPEAL if necessary.

3.3 ICF/IID Level of Care Criteria

In order to be Medicaid-certified at an ICF/IID level of care, a beneficiary shall meet the following criteria:

a. Require active treatment necessitating the ICF/IID level of care; and

b. Have a diagnosis of Intellectual Disability per the Diagnostic and Statistical Manual on Mental Disorders, fifth edition, text (DSM-5), or a condition that is closely related to mental retardation.

1. Intellectual Disability is a disability characterized by significant limitations both in general intellectual function resulting in, or associated with, deficits or impairments in adaptive behavior. The disability manifests before age 18.

2. Persons with closely related conditions refers to individuals who have a severe, chronic disability that meets ALL of the following conditions: A. is attributable to:

 I. Cerebral palsy, epilepsy; or

II. Any other condition, other than mental illness, found to be closely related to mental retardation because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of Intellectually Disabled persons, and requires treatment or services similar to those required for these persons; B. The related condition manifested before age 22;

C. Is likely to continue indefinitely; and

D. Have Intellectual Disability or a related condition resulting in substantial functional limitations in three or more of the following major life activity areas (refer to Attachment B):

I. Self-Care (ability to take care of basic life needs for food, hygiene, and appearance)

II. Understanding and use of language (ability to both understand others and to express ideas or information to others either verbally or non-verbally)

III. Learning (ability to acquire new behaviors, perceptions and information, and to apply experiences to new situations)

IV. Mobility (ambulatory, semi-ambulatory, non-ambulatory)

V. Self-direction (managing one’s social and personal life and ability to make decisions necessary to protect one’s life)

VI. Capacity for independent living (age-appropriate ability to live without extraordinary assistance).