Category: I/DD Architecture in North Carolina

The Arc of North Carolina recently gave a presentation to the ECAC (Exceptional Children’s Assistance Center) on housing choices for your child with I/DD.  Below are the slides.

Housing Pressentation 8.10.23

For those who have the Innovations Waiver, “Supported Living” is an option that promotes independent living in the community. (Of course, paid housing isn’t included.) Below is a link to an online guidebook that’s been years in the making through parent input and agency support.

Supported Living (SL) comes in 3 levels, with 3 being the highest. Be aware that SL hasn’t taken off as well in NC as it has in some other states, especially for SL 2&3. The DSP shortage, and lack of provider back-up (despite being required) when DSPs call in sick, really messes things up. Also, there’s the issue of loneliness if the individual doesn’t have a robust schedule of social outings and activities. Too often, it’s still just DSPs and family members who serve as friends. These flaws are acknowledged and people are attempting to address them.

Thanks to NCCDD for backing the creation of this guide book.

Home

HOPE NC has just released (November 2023) its survey of self-advocates and caregivers on the subject of housing. It’s not designed to be perfectly representative but gives you a great idea about what folks want and where they currently live. No surprise–a huge proportion are still living in the family home.

https://static1.squarespace.com/static/64557c03d4b8a710251c91e1/t/654d019feec78f6b1ed54762/1699545512482/Final+UNC+TEACCH+Housing+Needs+Assess+Oct+2023+compressed.pdf

The Forsyth County Commissioners recently funded a study of I/DD housing needs. A landing page with the 4 studies that were created can be found at the following link: https://www.ptrc.org/ForsythIDD. The “Final Report” is still being reviewed by stakeholders and is more of a call to action than a study on building an inclusive housing community.

NC START (Systematic, Therapeutic, Assessment, Respite and Treatment) is an NC DHHS program available to both children and adults with developmental disabilities and a co-occurring mental illness.  You can follow the links below for more information.  NC START for children is newly available in NC as of 2016.  Both children and adults may be placed on waiting lists for services.

The NC START program is divided into three regions (East, Central and West) and each region consists of a clinical team and a respite home. The clinical team (consisting of four START Coordinators) provides 24/7 crisis response and consultation, as well as on-going preventative cross-systems crisis prevention and intervention planning for eligible individuals. The crisis prevention component of NC START also involves working with the existing I/DD and mental health systems of care to provide technical assistance, consultation and support when working with individuals eligible for NC START. NC START also provides training and education on topics pertaining to care and treatment for individuals with I/DD, when requested and available.

The NC START clinical team will continue to work with referred individuals and their service/support system to reach sustained stabilization for the individual and their system of care, which generally takes one year from the start of the service. Within that time, the NC START team will work with the individual and their system of services and supports to systematically prepare for crises and reduce the frequency of restrictive interventions, hospital admissions and overall crisis events.

The NC START regional therapeutic respite homes (not yet available for children) each have two beds reserved for eligible individuals in crisis and two beds reserved for planned crisis prevention-eligible individuals* (4 beds total). START Coordinators are the conduit for access to all START services, including therapeutic respite.

*NC START planned therapeutic respite beds are only intended for eligible individuals living in unlicensed residential settings, such as family homes.

http://www.alliancebhc.org/consumers-families/crisis-and-access/nc-start-access-faqs/

To refer someone to NC START, just call. Anyone who knows the individual and understands their current status and treatment, behavioral history, etc. can make a referral.  Parents, legal guardians, the individual, care coordinators at MCOs, hospital, etc.  Each of the 3 regions have an access number for information and referrals (below).  Referrals for individuals in crisis can be made at any time of day/night 24/7/365 to the appropriate access number.  I think that Cardinal is in the Western Region – they will let you know when you call.

Contact Information:
NC START (West) (888) 974-2937
NC START (Central) (919) 865-8730, (800) 662-7119, x8730
NC START (East) (252) 571-9039

MEDICAID WAIVERS 101

LME/MCO Basics

In North Carolina, the state Division of Medical Assistance (DMA) has contracted with Local Management Entities/Managed Care Organizations (LME/MCOs) to administer Medicaid and State-Funded behavioral health services. Behavioral health services include mental health, intellectual and other developmental disabilities and substance abuse services. There are currently eight of these entities that operate in different geographic areas of the state. For example, Alliance Behavioral Healthcare is the LME/MCO for Wake, Durham, Johnston and Cumberland counties. If your client needs any of these services, they should contact the LME/MCO whose catchment area they live in.

The Innovations Waiver (discussed below) is administered by the LME/MCOs. The CAP C and CAP DA Waivers are administered through Lead Agencies overseen by DMA.

Background

The term 1915 (b)(c) Medicaid Waiver refers to two sections of the Social Security Act that allow states to apply for waivers from federal Medicaid policy. The (b) Waiver permits North Carolina to implement a Managed Care delivery system and allows the LME/MCOs to limit the provider network. The (c) Waiver (also called the 1915 HCBS Waiver) provides home and community-based services to Medicaid beneficiaries who would otherwise be institutionalized. The (c) Waiver allows for long term care services to be provided to recipients in the community rather than institutional settings.

The (b)(c) Waiver operates as a “capitated” system; the LME/MCOs are provided a pot of money each year from which to provide services to all Medicaid eligible individuals in their catchment area. The LME/MCOs are then “at risk”– if they spend too much, they will lose money – if they spend less than allotted, they are supposed to use the savings to provide additional services.

The idea of the Waivers was to control escalating Medicaid costs.

States have the discretion to choose the number of recipients that will be served in an HCBS Waiver program.

Why are they called Waivers?

The Medicaid Home and Community-Based Services (HCBS) waiver program that is authorized in §1915(c) of the Social Security Act permits North Carolina to furnish an array of home and community-based services that assist Medicaid beneficiaries to live in the community and avoid institutionalization. The State has broad discretion to design its waiver program to address the needs of the waiver’s target population.

These programs are called “Waivers” because North Carolina is permitted to “waive” certain Medicaid requirements in the administration of the program. For example, Medicaid requires that the income of a spouse or parent be considered in determining Medicaid eligibility for a person living with that spouse/parent. Under the Innovations Waiver, this requirement is “waived” so that only the recipient’s income is considered. The Act also requires states to provide comparable services in amount, duration, and scope to all Medicaid recipients. This requirement is waived to allow Waiver services to be offered only to individuals who receive a Waiver slot.

3 North Carolina HCBS Waivers

CAP/C

CAP/C (Community Alternatives Program for Children) is a Medicaid program that provides home care for medically fragile children (through age 20) who would otherwise require long-term hospital care or nursing facility care (only the child’s income is used in determining whether the child is Medicaid eligible). By providing in-home nursing care, case management, and other supports, CAP/C helps children remain at home with their families. This program is overseen by DMA but uses local lead agencies for implementation, often County DSS agencies.

See Clinical Coverage Policy 3K-1 for CAP/C eligibility criteria.

CAP/DA

The CAP/DA (Community Alternatives Program for Disabled Adults) program waives certain NC Medicaid requirements to furnish an array of home and community based services to adults (18 years of age and older) who are elderly, blind or otherwise disabled. The services are designed to provide an alternative to institutionalization for recipients who prefer to remain in their homes, and would be at risk of institutionalization without these services.

CAP/DA services are intended for situations where no household member, relative, caregiver, landlord, community/volunteer agency, or third party payer is able or willing to meet the needs of the recipient.

There is a consumer directed option also available under CAP/DA called CAP/Choice.

CAP/Choice, allows beneficiaries and their caregivers to direct their own services and supports which are provided in their own primary private residence and community. It offers beneficiaries the choice, flexibility and control over the types of services they receive, when and where the services are provided, and by whom the services are delivered.

See Clinical Coverage Policy 3K-2 for Eligibility Criteria for CAP/DA.

Innovations Waiver (formerly CAP MR/DD)

The North Carolina Innovations Waiver is a Home and Community-Based Services Medicaid program that provides services and supports for individuals with intellectual and/or developmental disabilities who are at risk of institutional care in an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF-IDD). The Innovations Waiver is the replacement for the CAP-MR/DD program. The goal is to provide an array of community-based services and supports to promote choice, control, and community integration as an alternative to institutionalization. These are services that are not otherwise available under the State Medicaid Plan.

Unfortunately, there are only a limited number of Waiver “slots,” so that although an individual may be eligible for the Waiver, there may not be a slot available for them to be able to receive services. However, there is a wait list for the program known as the Registry of Unmet Needs that is kept by the LME/MCO. The Registry of Unmet Needs operates on a first come-first served basis, so the sooner an individual gets on the list, the sooner they may be able to receive services. In certain limited circumstances, there are Emergency Waiver slots available.

Because of the high demand for these services, the wait list is extremely long and it could take many years before a slot becomes available to an individual on the waitlist. The Innovations Waiver currently has the capacity to serve 12,488 people in NC; however, there are still approximately 9,000 people on the Waitlist.

An individual can request to be placed on the waitlist by contacting their LME/MCO. It is best to request that an individual be placed on the Innovations Waiver waitlist in writing and have the LME/MCO confirm in writing that they have done so and the date it was done.

There is no entitlement to services under the Waiver program before a slot becomes available. However, once a person is placed on the Registry/Waitlist, the LME/MCO should refer that individual to other resources that may be available while they are waiting for a Waiver slot to open up.

Note that eligibility for Innovations Waiver services is not dependent on income because this Medicaid requirement is “waived”.

The Future of the Innovations Waiver

North Carolina is in the process of requesting that CMS approve an amendment to the Innovations Waiver. If approved, as expected, the new Waiver will take effect on January 1, 2016. At this point, it appears that all participants in the program will be “cross-walked” to the new Waiver beginning in January 2016.

1. The Arc of NC. You can go to arcnc.org but their “housing vacancy list” is accessible only by providers. (They were getting too many calls from people unqualified for the spaces.). You can also read their “housing resource guide” online. The Arc of North Carolina has developed over 342 residences that are operated in partnership with local organizations. These residences include group homes, small apartment buildings, duplexes and condominiums, together serving more than 2200 residents.

2. Targeted and Key programs. This is, effectively, a joint program between the NC Department of Health and Human Services (DHHS) and the NC Housing Finance Agency (NCHFA). The program is only for people with disabilities, but it’s disabilities of any kind. It begins with HFA offering incentives to developers to set aside 10-20% of their units to be affordable for people with disabilities. DHHS decides who gets to fill those units based on recommendations from qualified referring agencies, plus a background check. Once a person has been assigned to a “targeted” unit DHHS notifies HFA. HFA then administers the “Key” program for DHHS. The Key program subsidizes the rent of the targeted unit such that the renter pays no more than 25% of their income towards rent.

There are 10 regional housing coordinators at DHHS that manage the cases of people who have been referred to them. The regional coordinator for the Triangle, Frank Bryant, receives about 5-15 referrals a day. He gets referrals from Alliance’s service providers, Easter Seals, Daymark, and several other trained referral services. Any entity could be a referral service if they’ve gone through two days of NCHFA training. There is a wait list everywhere; it’s about 1-2 years in Durham. There are some 50-60 properties (500-600 units) in Frank Bryant’s region.

3. Local programs. You can also approach your city or county affordable housing programs. These are not exclusive to the disabled. There is public housing in Chapel Hill (919-968-2850) and Section 8 housing in Orange County (919-245-2490). They have long or closed wait lists.

You can also search for “affordable housing” by utilizing Socialserve.com or calling 1-877-428-8844. Here, you will find public housing properties, low income tax credit properties, project based rental assistance properties, USDA properties and the like. It is important to understand that these limited properties could have a lengthy wait list.

TWO MINOR SOURCES OF AFFORDABLE HOUSING.
These are not aimed specifically for disabilities. They are Chapel Hill’s Community Home Trust, which is for purchasing affordable homes (919-967-1545), and Raleigh-based CASA, which rents affordable housing (919-754-9960).

BE AWARE: Although “living in the community” is the top goal these days, there’s next to no affordable housing available these days, and virtually none reserved for I/DD.

From the Arc of North Carolina 5-10-17

Regarding people getting their budget letter and it showing a budget cut, I have a few helpful hints that I have used to help with planning and even with reconsideration reviews, mediations & appeals.

The Care Coordinator [now it’s your Tailored Care Manager] will almost always say to a family, “ask for what you need, even if it exceeds the budget guidelines”. They almost never add in “just be sure to submit enough information to justify ALL of the needs”.

Especially when asking for services that exceed the assigned budget guidelines, many of these things can be done right along with planning, to hopefully give the plan reviewer/Utilization Management (UM – the department that reviews and approves plans) enough information to clearly justify needs and approve the plan at first review. Even if they are not done during planning time, these things can be done to help prepare for the reconsideration review, mediation or appeal.

Although each situation is different and no one strategy can be applied in all situations, here are a few things that have been generally helpful:
1. Keep in mind that the only things UM knows about the individual is what is included in the plan and attachments to the plan
2. Have the planning team think about:
· What the person needs
· Why they need it
· What has happened in the past when the person didn’t get what they needed or what is likely to happen if they don’t get it
· Put all of this information in a letter or letters to be submitted with the plan, even if the information is already in the plan
3. Get letters of medical necessity from doctors that explain why the individual needs the support being requested. Hint – the doctor does not know anything about the Innovations rules. Consider writing up something for the doctor to review and revise as s/he sees fit. The letter will need to be on the physician’s letterhead.
4. Make sure that data is gathered throughout the year to document the individual’s unique issues that leads to them requiring care beyond what is described in their assigned individual budget level. This could be behavioral issues, seizures, lack of sleep, etc. Cardinal has provided templates that can be used to gather this data.
5. Also focus on the number of hours of support and why the individual needs them instead of the dollars that are associated with the needed supports
6. Look at the budget level assigned to the individual and then think about the individual and what information specific to the individual is not included in the description.
For example – Individual lives at home, one parent recently passed away, there are no family members who live close by to provide assistance and there is only 1 natural support in their life and this is why they would be considered an “outlier” in their budget level and need more support than the typical person in their budget level.
7. Some families have chosen to write a personal, heartfelt letter to UM stating why the individual needs the support requested and asking them to please not take away the support their family member needs to ensure her/his health and safety and ability to continue to live in the community.
8. UM may request to see the new short range goals for the new plan year, so before the plan is submitted for approval, it is a good idea to have the short range goal meetings with the provider agencies so that you don’t have to scramble at the last minute to get them completed and submitted.
9. UM may ask to see Preference Assessments and Functional Assessments from the provider agencies, so it is a good idea to request that the provider agencies have these done prior to the plan being submitted.
10. If services are denied or reduced and you to request a reconsideration review, mediation, appeal, always submit additional information, even if you think that it’s already been covered. The information might have been accidentally overlooked the first time or it is seen in a new light when presented again.

The Duke Center for Autism has a volunteer research registry which allows them to contact interested individuals to let them know about the research being conducted at the Center. Participation is always voluntary. Enrolling in the registry also offers the opportunity to receive newsletters and other communication about events and activities sponsored by the Center.

Joining the Duke Registry for Autism Research does not mean you are signing up for a study. Instead, they let you know of upcoming studies that may be of interest to you and your child. Studies may include behavioral or medical interventions, brain imaging, cognitive testing or computer-based questionnaires. You can choose what works best for you and your schedule, and opt out at any time.

To learn more about the Research Registry, contact them at 888.691.1062 or email them at autismresearch@dm.duke.edu.  They will answer any questions you have and, if you are willing, take down a bit of personal information and send you the forms. You can also visit their website at autismcenter.duke.edu.