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