Navigating Government Services for My Family Member With I/DD in the Piedmont Triad Region of North Carolina
We hope our guide will be helpful to our families. The information contained in this resource guide is a snapshot in time and meant for general guidance and overview information. It should not be taken as legal or financial advice. Government services can and often do change. For the latest information please visit each agency website directly.
Obtain a Diagnosis of I/DD From a Doctor
The individual must have a diagnosis of an intellectual or developmental disability (I/DD). This diagnosis must come from a doctor. School evaluations are not accepted. Developmental disabilities are defined as severe, chronic disabilities that occur before the age of 22 and are likely to continue indefinitely. These can include conditions like intellectual disability, autism spectrum disorder, cerebral palsy, and other similar conditions that result in substantial functional limitations in three or more major life activities.
In addition to the I/DD diagnosis, paperwork from the doctor should include a recent psychological evaluation, including an Intellectual/cognitive test such as an IQ assessment, and adaptive behavior assessment. If the individual is over 18, documentation supporting the diagnosis prior to the age of 18 is also required.
Apply for Medicaid Tailored Plan
What Is It?
Medicaid is a joint federal and state program that provides healthcare coverage to eligible low-income individuals and families, including children, pregnant women, elderly adults, and people with disabilities. States administer their own Medicaid programs within federal guidelines, leading to variations in coverage and eligibility across states.
Apply for Medicaid First, Then Choose the Tailored Plan
You can visit the NC DHHS (Department of Health and Human Services) website to apply for Medicaid online. https://medicaid.ncdhhs.gov/apply
If you want to apply in person, call your local Department of Social Services (DSS) office to get an appointment (there is a directory online at the link above). After submitting the application, the DSS will review it and notify you of the decision. If approved, you will receive information on the next steps and your Medicaid card.
You will need these Documents:
- Proof of identity (e.g., Social Security card, birth certificate).
- Proof of residency in North Carolina.
- Income verification (e.g., pay stubs, bank statements).
- Medical records documenting the I/DD diagnosis.
Selecting a Tailored Plan
Once Medicaid is approved, you can select a Tailored Plan through the NC Medicaid Managed Care website or by calling the Medicaid Contact Center at 1-833-870-5500. The enrollment process typically involves choosing a plan and a primary care provider.
Why Does My Family Member With I/DD Need the Tailored Plan?
The Tailored Plan started July 1, 2024. It offers the same basic benefits and services as Standard Plans, but they also offer additional services only available to individuals with I/DD, such as 1915i services or services through the Innovations Waiver.
Apply for the Innovations Waiver and get on the Registry of Unmet Needs (RUN), i.e. the "Wait List"
What Is It?
This Medicaid waiver provides services for individuals with I/DD to live as independently as possible within their communities. It includes services such as Medicaid health insurance, staff services both inside your home (personal care) and outside your home (community based care) for things such as personal care, accessing their community and community services, supported employment, and other services tailored to the individual’ s needs.
Does My Family Member With I/DD Qualify?
To qualify for the North Carolina Innovations Waiver, individuals must…
- Diagnosis of I/DD: Have a diagnosis of Intellectual or Developmental Disability (I/DD) (see Obtain a Diagnosis of I/DD From a Doctor).
- Medicaid Eligibility: The individual must also be eligible for Medicaid. This includes meeting financial criteria, which typically involve the individual (not their family) having limited income and resources.
- Level of Care Requirement: The individual must meet the criteria for Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF-IID) level of care. This means they require the level of care provided in an ICF-IID, but they can receive these services in their own home or community setting under the waiver.
- Functional Limitations: The individual must have substantial functional limitations in three or more major life activities. Major life activities can include self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency.
- Participation: The individual must use Innovations services listed in their person-centered plan at least once per month. This plan is developed to outline the specific services and supports needed to help the individual live more independently.
- Safe and Well-Being in the Community: The individual must be able to remain safe, healthy, and well in the community while using waiver services.
Why the Wait List?
There are only a certain number of NC Innovations Waiver slots. If the slots are full, your name will be added to the Registry of Unmet Needs, i.e. the “wait list.” The number of people who receive Innovations Waiver services is limited by available funding from the State of North Carolina and the Centers for Medicare and Medicaid Services (CMS). In 2024 there were between 18,000 and 20,000 individuals on the wait list in NC. However, it is still important to apply because the Innovations Waiver provides a broader range of services that your family member might need some day. There are currently several advocacy groups in NC lobbying for change and you do not know when those changes might mean services for your family member.
You do not need to be on the Registry/Wait List to qualify for 1915i services, but the application process for both is the same and so it is worth asking to be put on the list.
How to Apply
Contact your local MCO to apply and be put on the Wait List / Registry. The specific way to apply is always changing but likely you will need to call the organization and ask to apply to be put on the Registry for the Innovations Waiver.
Trillium – Guilford County
Vaya – Rockingham County
Partners – Forsyth/Davie/Davidson County
https://www.partnersbhm.org/north-carolina-innovations-waiver/
How Do I know If My Family Member With I/DD is On the List?
You should receive a notice in writing informing you that the person with I/DD has been placed on the NC Innovations Waiver Registry of Unmet Need and the date of the placement. If you do not have this letter, you should contact your local MCO.
Get Assessed for 1915i Services
Partners – Forsyth/Davie/Davidson County
https://www.partnersbhm.org/north-carolina-innovations-waiver/
What Can I Expect for Services?
If eligible, the person with I/DD, as well as their guardian or support person, will work with the MCO or LME-MCO to develop a person-centered plan. This plan outlines the specific 1915(i) services needed to support the individual in the community. It involves collaboration between the individual, their family, and healthcare providers.
The team will submit the person-centered plan to the MCO or LME-MCO for approval. The plan must detail how the 1915(i) services will help the individual maintain or improve their ability to live independently in the community. Once approved, the MCO or LME-MCO will coordinate the provision of 1915(i) services. These may include any or all of the benefits listed above.
Apply for Supplemental Security Income (SSI)
What Is It?
Supplemental Security Income (SSI) is a federal program in the United States that provides financial assistance to individuals who are elderly, blind, or disabled and have little or no income. The program is administered by the Social Security Administration (SSA) and aims to help recipients meet basic needs for food, clothing, and shelter. The assistance comes in the form of monthly payments to help cover basic living expenses. The amount varies based on individual circumstances, including other income and living arrangements.
Does My Family Member With I/DD Qualify?
Eligibility Requirements:
- Age: Individuals aged 65 or older.
- Disability: Adults and children who are blind or have a disability that significantly limits their ability to perform basic work activities.
- Income and Resources: Limited income and financial resources. The 2024 resource limits are $2,000 for individuals and $3,000 for couples. It is important to note that these are not your family’s resources, but the resources of the adult with I/DD.
How to Apply
Application Process:
- Online: You can start the application process on the SSA website. https://www.ssa.gov/apply/ssi
- In-Person: Visit your local Social Security office.
- By Phone: Call the SSA at 1-800-772-1213 (TTY 1-800-325-0778).
Required Documents:
- Social Security number and proof of age.
- Medical evidence of disability or blindness.
- Information about income, resources, and living arrangements.
The SSA will send you a formal decision letter via mail. This letter will inform you whether your application has been approved or denied. The decision letter will include:
- The amount of your monthly SSI benefit, if approved.
- The start date for your benefits.
- If denied, the letter will explain the reasons for the denial and provide information on how to appeal the decision if you disagree. Note you generally have 60 days from the date you receive the denial letter to request an appeal. We encourage you to appeal if you are initially denied. It is common for people to be denied and then win their appeal.
Apply for Social Security Income
If one or both parents of a biological, adopted, or dependent stepchild is receiving Social Security benefits, even if the parent is deceased, the dependent child may be eligible for Social Security income as a Disabled Adult Child (DAC).
Does My Family Member With I/DD Qualify?
If one or both parents are (or were) receiving Social Security retirement or disability benefits, their child may be eligible for benefits as a dependent. The child must be unmarried and meet one of the following criteria:
- Under Age 18: The child is eligible until they turn 18.
- Ages 18-19: The child is eligible if they are a full-time student in high school (benefits end when they graduate or two months after turning 19, whichever comes first).
- Over Age 18 with a Disability: The child is eligible if they have a disability that began before age 22.
What Can I Expect for Services?
If the child qualifies, they can receive benefits based on the Social Security earnings record of their retired, disabled, or deceased parent. The amount of benefits the child receives is generally up to 50% of the parent’s full retirement or disability benefit, or 75% of the deceased parent’s benefit.
How to Apply
Application Process:
- Contact the Social Security Administration (SSA) directly or visit their website to start the application process. You will need to provide documentation, including proof of the child’s age, relationship to the parents, and details of their disability if applicable.
Important Considerations
- Earnings Limit: If the child works, there may be earnings limits that could affect their eligibility for benefits.
- Parent’s Status: The benefits the child receives do not reduce the parent’s Social Security benefit amount.
- Guardianship: These are based on a parent’s Social Security record and are generally not affected by the child being under guardianship.
- SSI Benefits: Income from DAC benefits can reduce the SSI payment due to SSI’s income limits. The guardian must report any changes in income or living arrangements to the Social Security Administration (SSA) to ensure the correct SSI payment is calculated.
Apply for Guardianship
What is it?
Guardianship is a legal relationship established by a court in which one person (the guardian) is given the authority and responsibility to make decisions on behalf of another person (the ward) who is deemed unable to make decisions for themselves due to reasons such as intellectual and developmental disabilities (I/DD), mental illness, or age-related impairments.
Types of Guardianship
- Guardian of the Person: Responsible for making personal decisions for the ward, such as healthcare, living arrangements, and education.
- Guardian of the Estate: Manages the financial affairs and property of the ward.
- General Guardian: Combines the roles of both guardian of the person and guardian of the estate.
Why Do I Need It?
Guardianship should be considered when an individual is unable to make decisions about personal, financial, or medical matters due to their disability. Some doctors might not share personal medial information with parents if the patient is over 18, and they might not consider parents input in making medical decisions for your child. A guardian can also protect their family member with I/DD from exploitation, abuse, or neglect. They can advocate for the individual’s rights and safety as well as represent them in any legal matters. And they can help arrange and monitor services that improve the individual’s quality of life, such as educational programs, social activities, and employment opportunities.
Which Type Is Best for Me?
If your family member with I/DD does not have any financial income or property and they do not plan to in the near future, you might want to consider becoming a “Guardian of the Person” because there are not many reporting requirements. However, if your family member with I/DD does anticipate getting income, such as SSI payments, you should consider “General Guardianship.”
If one guardian wants to concentrate on personal well-being without the added burden of managing financial matters, they can become a Guardian of the Person and a different person can become Guardian of the Estate. Note that you can choose two guardians for any role, not just one. For example, if both parents want to be Guardian of the Person, that is possible, with a third person as Guardian of the Estate. However, those two people must be present for each decision made (for example it might be required that both guardians go to every doctor appointment).
How Do I Apply?
Obtain the Required Forms: The necessary forms can be obtained from the Clerk of Superior Court in the county where the person with I/DD resides. Forms include the Petition for Adjudication of Incompetence and Application for Appointment of Guardian.
File the Petition: File a Petition for Adjudication of Incompetence with the Clerk of Superior Court. This petition requests that the court determine the individual to be legally incompetent and appoint a guardian. You must provide evidence of the individual’s inability to manage their personal or financial affairs.
Notification: Notify the person with I/DD and their closest relatives about the petition. The court will send a notice of the hearing to the individual and their immediate family members.
Court Hearing: Attend the court hearing. The individual with I/DD will have the right to be present, and they may be represented by an attorney. The court will consider evidence from medical professionals, social workers, and other relevant parties to determine the necessity of guardianship.
Adjudication and Appointment: If the court finds the individual to be incompetent, it will issue an order of adjudication of incompetence and appoint a guardian. The guardian could be a family member, a friend, or a public guardian if no suitable private guardian is available.
Guardian’s Responsibilities: Once appointed, the guardian is responsible for making decisions on behalf of the person with I/DD. The guardian must act in the best interests of the individual and file annual reports with the court detailing the individual’s status and financial accounts.