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Highlights from the October 14, 2023 I/DD Summit

Thank you, everyone, for a gut-punching meeting! Huge apologies to the online folks who struggled to hear and be heard. A rich, edited transcript of the online chat is below. The meeting was not recorded.

It’s becoming clearer in my mind what we need to do next:

Create more PACIDs around the state (Wilmington, Greensboro, Charlotte, Boone). It costs almost nothing to run but requires one person who’s connected and has 2-3 hours a day to manage emails and attend Zooms. Janet Price-Ferrel has tentatively volunteered for Greensboro.
Connect to ECAC (whatever that is) which reaches school-age parents. I can start that, but could the mom who suggested it to me drop me an email?
Connect to self-advocacy groups (which aren’t yet strong) such as the nascent LENS project. I can do that with Chris & Cheryl.
Time a community-wide email and in-person “assault” on the legislature for a specific day in April or May, when the General Assembly starts up again. Bring in kids, or photos of kids, with a life story (spoken or written) in bullet points, and a short list of identical demands. Self-advocates of course represent themselves.

I know there are some squabbles within the I/DD community over ICFs and day programs, but I never hear anyone disagree with the statement that we should keep all options open and enable informed CHOICE of where we live, work, and play. A short list of basic, identical demands isn’t hard to create, and people can always embellish in their personal communications.

IN-PERSON HIGHLIGHTS

1st Panel on Where Things Stand
The bipartisan I/DD Caucus in the state legislature has been newly reconstituted and will be holding a kind of public hearing session. I will keep you posted.
There are very few legislators that “get it” on I/DD. They don’t have a personal attachment. Legislators respond to emotions, and the I/DD lobbyists—such as they are—can’t act alone to educate them for us.
Although it’s hard to feel grateful for the scraps we got in the recently approved budget, we need to thank legislators for getting us to the “20-yard line” and then push them to get us to the 50-yard line.
Schools are a war zone for parents with I/DD kids. Kids keep getting sent home for “behavior problems” when in fact they need a better ratio of staff and better teacher/ TA pay to attract them. Our kids act out because of their disability, not because they are “bad”.
There is a huge number of Baby Boomers with adult children still at home and having to plan for their eventual incapacitation and death. Even the most privilaged among us are at a complete loss. No housing, no DSPs. Having the Innovations Waiver means nothing without those.
DHHS is required by law to use that impossible-to-read language in the letters it sent out on Tailored Plans, etc. It is working to create “plain language” versions. DHHS has also just started a monthly webinar called Side-by-Side that is desinged to engage parents, providers, and others in conversations about our needs and the new 5-year strategic plan it is going to develop. I’ll send the registration link for the next one to my PACID group, or you can try asking to get on their email notification list at strategyplanningoffice@dhhs.nc.gov.
The legislature has mandated a reduction in the number of LME/MCOs from 6 to 4. This is designed to increase the population and provider network base. Alliance Health is the biggest by far, covering the state’s major metro areas.
Every I/DD person without the Innovations Waiver but who does get Medicaid is eligible for the new 1915(i) services. These are entitlement services (no wait list) with a generous amount of hours for respite, home and community-based services, job coaching, and more. The catch will of course be a shortage of DSPs to perform those services. Contact your LME/MCO. The person will first need to be assessed for need. People transitioning out of B3 services have been prioritized.
The LME/MCOs have (finally) come together to create a uniform application process for providers to join their networks. Providers that crossed boundaries were balking because each LME/MCO had a different set of forms.

2nd Panel on Housing:
The state’s newly released strategic plan for housing (as required under the Olmstead Decision) has zip for I/DD. I/DD is treated as just another disability while existing housing programs are basically either open to first-come-first serve for any disability, or actually targeted to a specific disability population—mental health, homeless, veterans, elderly, and increasingly substance use. Yet I/DD is the only one faced with lifelong needs. Some other states pull I/DD housing and services out into a separate entity.
There are 7 state agencies dealing with housing. The state’s Olmstead plan calls for coordination under the umbrella of an existing entity that was created for one of the other populations (homeless?).
TCL (Transitions to Community Living) provides state-funded rental subsidies, but it’s been reserved for mental health folks moving out of institutions, due to an earlier lawsuit. A few I/DD folks benefit, probably because of dual diagnosis. There is something called Money Follows the Person, but it, too, is for moving out of institutions, not family homes. And I don’t think MFP covers housing costs anyway.
HUD Announces $212 Million Funding Opportunity to Expand Affordable Housing Options for Persons with Disabilities | HUD.gov / U.S. Department of Housing and Urban Development (HUD). North Carolina has not availed itself of these funds in recent years, even though the model program was developed in North Carolina many years ago.
Group homes were “at the cutting edge” 20 years ago. They are still an important option today but are facing extinction due to shrinking revenues. No rate increase in decades. Also new federal mandates are forcing a reduction in beds per unit, down from 6 to 4, which is financially unsustainable without going to private pay. The Arc of NC is the state’s largest provider of group homes. They have a 10% vacancy rate because residents must have the Innovation Waiver and LME/MCOs haven’t been good about referring people. (See chat below about how to get in an Arc home.) Meanwhile, HUD has squashed the Arc’s efforts to get creative, such as converting homes to duplexes.
There are several grassroots initiatives across the state to create housing developments for I/DD, each of them taking years to find land, funding, and developers. But even the large ones will not come close to meeting demand. Nevertheless, there are Tiny Homes and a new concept called interdependent living where I/DD folks live in affordable units alongside neurotypical folks. HOPE NC would include a community center and a “concierge” to actively engage folks if they so choose.
County governments can’t do much except offer county-owned land. Some counties offer public housing, but vacancies are scarce. The Forsyth County Commission used $150,000 in federal ARPA (COVID) funds to contract for a study of I/DD housing needs. The just-released report documents where the needs are concentrated, and the great discrepancy between what government reports are the number and what the actual number SHOULD be based on standard demographic data on the incidence of I/DD. In other words, thousands of people are off the service radar.
Cities get federal Community Development Block Grants (CDBG) that can be used to partner with nonprofits or others to create affordable housing. Yet too often affordable housing is targeted to families earning above 30% of the Area Median Income (AMI). Adults dependent on just SSI fall below that line. Cities also administer scarce Section 8 housing vouchers, allocated by HUD, but landlords are loathe to accept vouchers.

EDITED TRANSCRIPT OF THE CHAT—very good stuff in here

Cheryl Powell
And the self-advocate who has an aging caregiver is worried as well.

Koyne and Charlie
How do we conncet to the DHHS Side by Side meetings?

Sarah Potter
Oct 23 Side by Side, Registration:
https://www.zoomgov.com/meeting/register/vJIsduusrTsuEr3MP1SHj7smx4OysoTELcE#/registration?os=ipad

MarilynRaines
Where can a parent find affordable housing for an indepedent working adult with no benefits who has a small cat…CASA does not allow unless it’s a certified service animal?

Cheryl Powell
So I will say that, as a DSP, I know that they (providers) depend on our love for the people we work with to keep us there.

Beth Field
How do we ensure our I/DD Community is focused across the lifespan toward solutions when we have such diverse needs?

Emrick and Kathy Jones
In the same boat as Gwen Coleman. When you have a Deaf/Blind/Multi-handicapped young adult you need and Intervener, Interpreter, and they get paid $30/$40 an hour. We have always had people that can’t speak to our son who is 29 now. Very aggravating.

Koyne and Charlie
Question: we have a national crises hiring DSP’s. When appendix K expires, what happens to parents that are presently getting paid to provide supports for their children. We provide 54 hours of CLS for our daughter. It is my understanding that when Appendix K expires parents of adult children will no longer be allowed to provide more than 40 hrs care per week. Parents of young children will no longer be allowed to provide paid care. what are we to do when we cant find caregivers and then we arent allowed to get paid. Is there something that can be done to continue this appendix K provision.

Avay
I am happy for the parents that actually receive services. I would loved to receive some type of service. I have been on the Alliance waiver wait list for more than 10 years been dropped off the list and back on the list. I had to start over when I was added back on the list in 2016

Cheryl Powell
I respect all the families. Absolutely 100 percent. Please don’t forget the people living with a disability need to be involved in all of this as well. To the level that the person with a disability is able. We must work together. We will make a difference together.

Orah Raia/HOPE NC
I just received word that my son, after 13 years on the wait list, is going to receive the waiver. But…does that mean anything anymore when there are no supports available? Please, please do the work that’s needed to address these issues…for many of us aging caregivers, we don’t have time on our side.

MarilynRaines
Can someone on the panel address the problem of adults with co-occuring Mental Health and recently diagnosed IDD (high functioning Autism) who fall between cracks of service providers who have no clue how to provide services (ie MH/Voc Rehab) or to talk with each other? The silo problem in NC ?

Annette Smith
Our LMEs should work with University and Community College departments to formalize [required] service hours, especially to those on scholarships in areas of PT, OT, social work, special ed etc. It needs to be structured to create a pipeline of even qualified DSPs. Heck my sister in FL suggested sports students in scholarship.

Maria Troiani Howard
We’re in rural Chatham County. My son is 28 on Innovations waiver. I work as RDSE because no DSP’s available (pay too .low at $15/hr). PLUS NO DAY PROGRAM, activities based in area. PLEASE ADDRESS providers in rural counties!!!

Annette Smith
Pause LME consolidation, pause Foster Care. Do Medicaid expansion and Tailored Plan and other needed programs with deadlines right. Only way to go forward.

Cheryl Powell
There are states that have no wait-list

Maria Troiani Howard
I’m reminded of the folks with diabilities in 70’s/80’s who stopped traffic in street, crawled up steps to legislature, occupied govn’t buildings to get ADA. Time for that grassroots action again???

Becky
Will pay be increased for Relative as Providers when no DSPs can be found to work with an adult? Right now the pay is capped at $13 for me as a RAP through an agency.

Amy Fowler
The NCGA needs to accelerate opening up waiver slots and pay direct support providers enough so that folks who already have the waiver can actually find direct support providers.

Carolyn Hoskins
As several people mentioned, we need to be sure the raises are going to the DSP and not the agencies.

Lisa Grafstein
Also, keep in mind that LME/MCOs set the rates for providers and are responsible for making sure there are enough providers. In other words, they should be paying what it takes to get and keep providers/DSPs.

Cheryl Powell
We are stuck between a rock and a hard place. If you have the waiver you can’t get what you need and if you don’t have the waiver you can’t get what you need. In the meantime CEOs are making bank. I’m sorry if that CEO comment offends anyone.

Maria Troiani Howard
reimbursement rate to our staff agency … for me as RDSE (mom working because we can’t find DSP’s) was just reduced to $5.92/unit (15 mins/unit) . Other, non relative DSP is reimbursed at $7.80/unit. Does this mean our staffing agency is now getting less for my work? And….why did they (legislature?) reduce reimbursement for parents? Is my time not as valuable as a DSP hire? I feel disrespected as a mom working with my son. I’m here 24/7 for him… overnight. DSP’s can quit when going gets tough.

Annette Smith
Check out One Wake, a coalition for low cost housing. Oct 17 meeting with Zebulon candidates.

Cheryl Powell
We just live in complication in the disability community. I don’t know all the answers. I just know I want to help anyway I can.

Cheryl Powell
Here in Wilmington they are building housing for our homeless population. Which is wonderful. No building housing for people with disabilities though.

Maria Troiani Howard
That’s a problem with everything! Intake process and paperwork. It’s SOOOO frustrating, exclusionary and challenging to apply for and understand the documents.

Amy Fowler
So you are saying you need to go through an LME to access Arc housing? [Carol here: Yes, or another organization they can refer you to if you call Arc. Arc of NC screens because most requests were coming from people who aren’t eligible—like low-income people without I/DD—and federal law requires Arc to respond to every single request with a 37-page evaluation regardless of how obvious it is they won’t qualify. Way too much staff time. HUD is pretty awful with restrictions.]

Carolyn Hoskins
What concerns me is the cookie cutter approach to the IDD population. Not everyone can live in independent housing. We need to look at individual needs especially appropriate settings as they get older.

Lisa Grafstein
Right now, there’s a lot of “cherry picking” – meaning that some providers select residents with lower needs (who may be able to live independently with support), and that is part of what limits choices for those with higher needs. The rates are the same regardless.

Cheryl Powell
Respectfully, I don’t understand how an individual with a disability that has very complex medical needs can live safely in the community. I’m thinking about people who need machines to help them live. I’m not against it but I don’t understand it.

Cheryl Powell
It’s like they (the system) forgets that people with disabilities are people.

Carolyn Hoskins
All of these rules and the bureaucracy make it difficult for people to provide services and to be innovative in their approaches to meet the needs

Orah Raia/HOPE
People with I/DD should have an option as to where and how they want to live, NC has a foundation of segregated settings, we need to expand the options in this state, not limit them.

Koyne and Charlie
Sounds like the Care Coordinators need to be educated on the available housing out there

Maria Troiani Howard
After 28 years, I’m tired. Still working on and hearing the same issues recycled. I applaud everyone working diligently. It’s a systemic problem in all human services. Don’t have any answers, but radical change needed in how we humans serve each other. Holding HOPE!

Orah Raia/HOPE
By providing that “Dignity of Risk”, we see people with disabilities rise to a higher level of “independence.” As Laura said, we’re so interdependent but we ought to provide opportunities for people with I/DD to maximize their own potential.

Emrick and Kathy Jones
Our son who is 29 and Deaf/Blind Multi-handicapped and on the waiver program since birth. Very active in the community and needs interpreters and interveners for communication and access to the community. If the family purchases a home for their young adult, is it possible to use some of the housing fund to pay DSP’s that should be paid upwards of $30 an hour???

Lisa Grafstein
I appreciate the calm way people are talking about these issues. To reiterate a point someone made earlier in the chat, it may be time for more vocal action. With my NCGA hat on, I want to invite you all to camp out at the legislative building and demand change. Self-advocates tell compelling stories, as do families. But it will take repetition, repetition, repetition. There are people whose job is to spend every day in the legislature and create a narrative about their specific issue. We need a concerted and strategic effort, IMO.

Maria Troiani Howard
Perhaps giving more control to parent groups, and untightening legislature control. Legislature processes money, parent groups decide the how… radical change?

Maria Troiani Howard
First in Families NC is a good model of this

Cheryl Powell
Data is so very important

11:40:53 From JanCombs
Absolutely. The money funnels into other programs and supports with more vocal advocates perhaps – less funding is allocated for I/DD folks.

Krista Caraway
I drove my son to Central Regional Hospital as a walk=in after over a dozen ER discharges after being told CRH didn’t “have a bed”. Sad we as parents need to go to these extremes.

Carolyn Hoskins
One of my sons went through horrible times during puberty into young adulthood. Spent some time in ED with him. They had an entire wing where they kept people because no beds for acute issue. Some had been there for weeks.

Annette Smith
Separation anxiety is a huge problem in IDD

Alisa
There needs to be a forum of parents of young ones and old ones..we need to be sharing our journey and sharing best practices

JanCombs
For autism issues – contact https://www.autismsociety-nc.org/make-voice-heard/, Jennifer Mahan, Director of Advocacy and Public Policy, jmahan@autismsociety-nc.org

Diane Berth
I’m in Wilmington (parent of 40 year-old) if anyone would like to connect and collaborate: diane@berthbehaviorconsultation.com

Annette Smith
JOIN ON FACEBOOK. NC DSP WORKFORCE

Opening remarks from the I/DD Summit of October 14, 2023

The goal of this Summit is to spark a sea change in the system serving I/DD.

I’ll start with 3 family stories:

1. Chapel Hill—Dotty Foley was perhaps THE top parent advocate in the state. Her adult son has autism, is nonverbal, and has a low IQ. He had the Innovations Waiver. A North Carolinian for 18 years, Dotty scraped together the means for her son to live in his own place in the community. For 6 years they used Supported Living Level 3 and she was the Employer of Record. Despite being enabled to pay her DSPs a much higher wage, there were unending staff gaps which she & her husband had to fill. She concluded the system would never improve enough in her lifetime to guarantee a high level of care for her son once she died. And she was tired of fighting for every single thing. So she left for Massachusetts last month.

2. Greenville—a singe mom has an adult daughter with Angelman syndrome who is nonverbal, confined to a wheelchair, and has low IQ. She has the Innovation Waiver. She’s had zero service for years, save for 3 DSPs who each quit after about a week because “the work was too hard”. The daughter can’t be left alone so mom hasn’t been to her own doctor or dentist in years. Lacking emergency respite, she was forced to bring her daughter with her as her mom died in the hospital. She’s too exhausted to even write her legislator, much less visit him. She can’t work and she’s about to lose her income as a caregiver when Appendix K expires.

3. Greensboro—somehow a mom bought a ticket to Ted Budd’s business-only fundraiser. She took along her son with Down syndrome, in his PJs, and confronted him saying “this is my son and he needs XYZ services.” Ted Budd actually picked up the phone, called some people, and suddenly her son had a Waiver (based on a loophole for the terminally ill) and got more services than they needed. That whole thing was probably illegal, and more important, that’s no way to run a system.

So what are we to do? We, parents of both children and adults, must step up, get organized, and tell our moving stories to our state representatives. We also need to work hand-in-glove with self-advocates and I/DD organizations.

Some history. We got what services we do have in part because a group of “radical” self-advocates in the late 1980s refused to be ignored by the federal government, which was ignoring its own laws intended to support people with I/DD. It was framed a civil rights issue. As such, they even got some support from the Black Panthers though few (if any) Blacks were in the self-advocate group.

We are at another inflection point in the history of I/DD. Why? Because Baby Boomers—a big bulge in the population—were the first generation to NOT put their babies in state institutions. But we Baby Boomers are now old and dying, and many of our adult kids are still in the family home. Where are they to go?

Why has this problem festered? Parents are exhausted, poorly informed, disconnected from each other, discouraged, and even scared of retribution if they object too much. There’s another reason: our kids with I/DD aren’t scary or visible. They don’t make headlines shooting up schools (mental health), dropping dead from substance abuse, begging on the streets as homeless people, or wasting away in a dreary nursing home. Those populations get funding, as they should.

And while every legislator has an elderly parent, few have a personal connection to I/DD. Moreover, look at who has the power and where they live. Senate President Phil Berger has Guilford and Rockingham counties, which collectively have about 2,000 on the wait list, But his actual district skirts the big cities to include the town of Shelby, 5 cows and a mountain. House Speaker Tim Moore has Cleveland and Rutherford counties, which have only about 200 on the wait list, but his district doesn’t contain cities of note. I’m betting neither gets many constituent visits about I/DD.

Yes, parents lash out, though too often at the wrong entity. They understandably blame who they see—DHHS, their provider, or the LME/MCO. Sure those guys screw up, but it’s the state legislature that controls those entities, as well as the purse strings on an ever-shrinking pot of state tax revenue. The federal government isn’t coming to the rescue.

This is a nonpartisan, family-values issue. Spending on our children and adults with I/DD is not a cost, it’s an investment in our communities and society writ large.

Finally, a single state legislator has little-to-no power to help a family or self-advocate, but the legislature as a whole does. That’s why we need a coordinated and continuous avalanche of personal stories going to the legislature.

Our next meeting

Our next PACID meeting is slated for January 2024 at 7:00 pm, on the subject yet to be determined. An email about the meeting will be sent in advance to PACID members.

For questions or to request to join PACID for free, contact Carol Conway at carol.ann.conway@gmail.com.

Treatment for Dual Diagnosis

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

What are Waivers?

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.

How to locate housing

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.

10 Tips if “Budget Letter” Cuts Service

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.

Duke Registry for Autism Research

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.

If you’re waiting for the Innovations Waiver

(1) If you think you are on the wait list for the waiver, think again. You must have in your possession a letter from your LME/MCO (e.g., Alliance Health) indicating your child is on the wait list (now called the Registry of Unmet Needs). The letter should be dated and the address CURRENT. If you have moved and your forwarding service has expired you won’t see the letter they send saying you’ve been tapped to get the waiver!

(2) If you are indeed on the wait list, there are new and relatively generous services you can access through what’s called 1915(i). Call your LME/MCO and ask to get the required pre-assessment. (If you were previously getting “B3” services, those are now gone and you’ll have to be re-assessed for 1915(i).)

(3) If you have the Waiver, or are on the wait list, you should have by now chosen or been assigned a Tailored Care Manager (TCM). The TCM is supposed to be your main point of contact–your advocate for finding services. A lot of LME/MCOs have initially assigned one their own employees to be the TCM, but you can choose another one from a certified provider of TCM services. Those are probably better for you since they are not inside the same agency that could be denying you services. There are many to choose from (e.g., the Arc of NC). Eventually, the LME/MCOs are supposed to be out of the business of TCM.