BARRIERS TO PARENT-LED EFFORTS TO BUILD HOUSING FOR ADULTS WITH I/DD[1]

7/6/24

FOREWORD

This paper is based on a meeting convened by the seven county CFACs that advise Alliance Health, the LME/MCO serving most of urban North Carolina. Alliance kindly sponsored the event. It was a hybrid meeting with over 100 attending, most from the Triangle and Mecklenburg Counties but including many state officials. The goal was to identify barriers to parent-led efforts and generate ideas to get around them. This paper is authored by Carol Conway[2] and is not an official document of either Alliance or its CFACs. Any mistakes are my own.

THE BIG PICTURE

About 200,000 North Carolinians of working age have some level of cognitive disability. Instead of going off to college or on to a job after high school graduation, these adults typically end up sitting at the parents’ home with little to do and limited social engagement. Idle and unsupervised, some get into drugs or other trouble and account for about a quarter of the prison population (extremely expensive “housing”).

Tellingly, over 17,000 people with I/DD are on the state’s wait list for the Innovation Waiver, the “golden ticket” for support services. Multiples of that don’t even know the wait list exists. Some on the wait list are authorized to get a limited amount of service, but even those that already have the “golden ticket” can’t get enough help due to an extreme shortage of DSPs.[3]

Note that “services” do not include housing. Medicaid pays for services, but it cannot cover housing costs unless the adult resides in “an institutional setting”. Housing doesn’t work without services, and vice versa.

Lacking both services and housing for their child, a parent often must quit work after high school graduation, especially if their child has a high level of need. That means less family income, less going into their 401K plan, lower payments into (and out of) Social Security, and lower state GDP. No one should meet this fate from a roll of the genetic dice. Having a disabled child is not a “family problem”, it is society’s obligation.

No one knows what the total numbers are. Absolutely no one tracks I/DD.

We therefore need a paradigm shift in how we approach the needs of the I/DD community. If we appear fragmented in our “asks” it’s because the state looks at our kids in bits and pieces rather than as a whole person.

THE STATUS OF HOUSING FOR I/DD

For the moment, set aside the issue of wrap-around services necessary for life and participating as an equal citizen. We turn to housing.

Only a few thousand of those 200,000 working age adults with I/DD have a place outside the family home (or prison). The battle cry of “deinstitutionalization” sounds good but doesn’t really apply to many of our people. Our adults need help getting out of the family home.

Market-rate housing is out of the question for adults dependent on SSI or SSDI. Even if they work to supplement their check, their wages and hours are typically not enough to cover rent, utilities, food, transportation, and all the necessities of life.[4]

What about subsidized housing? Perhaps 3,000 of our 200,000 adults are in HUD-subsidized group homes[5], and let’s say 1,000 more live in private-pay group homes or homes the family has gifted for their use. Add another 5,000 who are in government-paid Intermediate Care Facilities (ICFs)[6], and maybe another 1,000 with HUD-issued Housing Choice Vouchers. All these usually have very long wait lists.

Why don’t we know these numbers? We are invisible and, again, not counted.

We do have many large “affordable housing” organizations which get low-cost government loans and grants, but very few of their units end up going to adults with I/DD. Let’s just say another 1,000 adults with I/DD get such a unit, although that’s probably a gross overcount. Why? Many of those units are built for a specific subpopulation (mental health, homeless, substance use recovery, vets, elderly, working families, people transitioning out of prison, etc.) and not I/DD. Other subsidized housing projects set aside 10-20% of their units to be affordable for people with disabilities. But “disability” is broadly defined, and the competition is instant and fierce. Parents and self-advocates are not in the loop to hear about these projects before applications are cut off. So perhaps another 500 adults with I/DD have been lucky enough to snare one of these units. It needs to be said here that few of these units accommodate wheelchairs.

County public housing has long wait lists which are often even closed. Because they are seen as segregated, unlikely to expand.

That all adds up to about 10,000 of our 200,000 working age adults getting housing outside the family home (other than a possible 50,000 in prison).

Shared living (roommates) is an option for some. But finding a roommate with the right chemistry is hard for anyone, and adults with a cognitive impairment are at risk of abuse if paired with a random person from the want ads.

It needn’t be this way. As one panelist writes: “Other states are finding ways to fund services in all kinds of settings.  They are paying rental subsidies for people to live independently as well as paying room and board for group homes. It’s that kind of flexibility that we need in NC.”

Meanwhile, families are torn apart as their adult children are placed in group homes far away because it’s the only spot available.[7]

THE GRASSROOTS RESPONSE

Faced with this housing crisis and a tidal wave of death about to hit the Baby Boomer generation[8], small parent groups, parent-led nonprofits, and a few small-scale champions (such as L’Arche and a special education teacher), are now attempting to build housing on their own. In this paper we just call them all “parent-led” for the sake of simplicity.

A description of these projects is given at the end of this paper, but they can be summarized as including non-traditional group homes, tiny homes, apartment complexes, farms, and campus-like dorms. Some are intentionally multi-ability, and some are forced to be open to all disabilities based on the type of government funding they seek.

Private-pay is the default option that many of these projects will fall back upon if they can’t overcome the barriers, described below. Only the wealthy can afford the one million dollars or more needed to fund private-pay housing across the adult’s lifetime.

In each case the projects meet or exceed the intent of the various disability laws and regulations. The intent can be encapsulated into just three words: choice, control, community. The regulations are well-intentioned but leave little room for innovations that respect individual preferences and adapt to unique needs and situations.

CHOICE: The parent-led projects provide families and self-advocates with a choice in where to live. They can choose to live with disabled peers if that brings them the most comfort and friendship. Some adults might prefer to live in a “segregated setting”, such as those akin to a retirement community. While segregated settings aren’t forbidden by law, they are supposed to be reserved only for those who absolutely need it. But some of our adults WANT it even if they don’t NEED it. That is a choice. The special education teacher in the workshop remarked that when she asked her students about where they wanted to live after graduation they replied, “It is scary to live on our own, but if I can do it with friends it is something I want as a goal for my future.” They liked the proposed “college dorm quad” setting.

CONTROL: Each of the proposed parent-led projects give the adults as much freedom as they can responsibly handle. A few would have set menus and mealtimes for the convenience of the individual as well as the provider.[9] That shouldn’t be a deal-killer if the person knows this in advance and still chooses to live there. Lots of our special adults thrive on structure and predictability. There would also be a lease or other legal arrangement in place to protect the tenant’s rights.

COMMUNITY: Parent-led projects want the adults to be happy, active, and as widely engaged in the community as the person chooses. They seek to give them a sense of belonging in both the internal and external environment. Having a volunteer or paid job downtown is not a metric for belonging. Who are we to define for them what their community of choice is? At least one of the projects embeds a paid “concierge” whose sole job is to create community connections.

THE BARRIERS THEY HIT

Adults with I/DD are unique. By definition, a cognitive impairment leaves a person more susceptible to manipulation and abuse and they may be unable to recognize and articulate it. And, unlike other disabilities, most have no prior experience living outside the family home, are unable to fully understand a lease agreement, and are less able to manage the communication necessary for good relations with the landlord and neighbors. Some of these barriers can go away with the right training and DSP support, but those alone are not enough to dispel loneliness and truly bring them into the community of their choice.

The parent-led projects take that into account. But they face many barriers.

COST & TIME

Building anything takes years and loads of money. I/DD housing even more so. Any adaptation will cost extra (e.g., roll-in showers, ramps, special safety features like burn-safe stoves, or extra insulation…our guys can be unbelievably noisy).

Most parent-led projects have sought and failed to get funding from the usual sources for affordable housing. The primary sources are programs under NCHFA and HUD.

It can cost upwards of $80,000 in consulting and fees just to apply for one type of NCHFA loan, plus you have poor odds of winning (with no money back). Why? Each funder has its own set of rules, regulations, criteria for scoring, multiple reviews, set timeframes, and other hoops to jump through. These steps are understandable and not unusual, but they inherently shut down innovation and new entrants. Plus, in some cases you can’t mix one funding source with another.

Some sources of government funding have more flexibility than others but still demand expensive consultants or developers to go this route.[10]

For example, Peacehaven Community Farm has spent at least $30,000 for consultants so far and dedicated 1,000 person-hours of staff time. The Midtown Housing Coalition is counting the days to hit the 3-year mark as a nonprofit, necessary to be eligible for a NCHFA loan.

Meanwhile, as hinted above, you can’t plan for housing without knowing with certainty whether you can find upfront funding for site acquisition and land preparation, or cobble together an income stream to support services and loan repayments.

There needs to be a way to bypass or accelerate the process, or even intervene when the private sector fails them.[11]

OLMSTEAD & MEDICAID HCBS

What is Olmstead? This is how DHHS describes it: Olmstead is the most important U.S. Supreme Court case for people with disabilities.[12] Olmstead was based on the Americans with Disabilities Act (ADA). Olmstead says people with disabilities have the right to live in the community. It says that people do not have to live or receive services in an institution, nursing home or any other setting separated from others without disabilities to get the services they need. Those services should also be provided in the community. Learn more about North Carolina’s Olmstead Plan at the North Carolina Olmstead website.

Olmstead did succeed in ending mass institutionalization, but as interpreted through state regulations, these legal protections now act as a barrier to making the dream a reality. Our state regulations had the effect of prescribing andprohibiting what qualifies for Medicaid support, essentially saying there’s just two ways to “live in the community” — in a 4-bed group home or in a housing unit among the nondisabled. They also imply everyone would prefer to live among the non-disabled. Perhaps the pendulum has swung too far.

Medicaid does not pay rent. Our state has extremely limited programs that subsidize rent out of the state budget.

Funding for housing construction and support services come from completely different agency silos. Housing cannot work without services. Medicaid controls the services and thus the housing options as well. It gets complicated.

For example, it is a misconception that Medicaid’s HCBS Settings Rule[13] imposes an upper limit on how many disabled people can live together. Instead, the Settings Rule focuses on the experience of the individual in the setting. But states must apply to CMS for “waivers”[14] to get the Medicaid money that funds the services, and North Carolina chose to impose a 4-bed limit on group homes, likely under pressure from CMS staff.[15] So it’s possible to get licensed for up to six beds, but for a new provider under the latest waiver you cannot bill for Medicaid services beyond four.

The authors of the Settings Rule didn’t help. Under this regulation disability housing that’s adjacent to or on the grounds of a public institution “is presumed to be a setting that has the qualities of an institution” unless the state determines otherwise via “heightened scrutiny”. The burden of proof is on the developer and has a chilling effect. Vacant land on university campuses, continuing care retirement centers, and medical campuses should not trigger heightened scrutiny. These could be sources of cheap or donated land and are potentially vibrant environments that also offer job opportunities.

For good and for bad, the federal laws are open to interpretation. It’s good that some regulations assert you have wiggle room based on the facts of each case, but it’s bad when downstream entities pile on their own strictures and definitions that shut down innovations.

Existing regulations and definitions may not have an actual basis in the law and need to be scrutinized and challenged.[16] Times have changed.

LEGAL QUESTIONS

Every parent-led project needs, or will need, legal advice specialized in disability housing. That’s very expensive and usually requires an open tab.

The legal requirements to do such a simple thing as build a house shouldn’t be so inaccessible. There are thousands of pages of dense text to master. Just getting a license is a major undertaking (e.g., a 25-page handbook which may or may not be up to date with amendments).

The questions are many and detailed. For example, what is law on tenant selection? It matters if a parent has invested a large amount of their time and money towards the project with no guarantee their own child will get in.

Challenging or appealing a decision is quite costly.

Parent-led projects need a freely available housing lawyer.

SOLID AND FAST INFORMATION

In every area of the I/DD world there are frequent complaints about not getting the same answer twice, even from the same agency. It’s no different for housing.

Scattered and inaccessible information, multiple definitions for the same thing, and staff who don’t know they don’t know are major problems. Newbies to the housing world are forced to build the plane as they fly it.

Speed is another factor inhibiting innovation. Each question must be run up the chain of command, back down again, and put into writing. It can literally take weeks and months to get an answer to just one thing. Meanwhile, decisions on the ground must be made quickly–property up for grabs must be locked down, donors need to know if the project will be allowed to advance.

AGENCY SILOS

It’s not just the seven state housing agencies you might have to navigate, it’s also several different divisions within the state’s Department of Health and Human Services (DHHS), the LME/MCO[17], and multiple levels of local agencies. Plus, there’s a systemwide disconnect–regulations and definitions don’t work together within or across governmental lines[18].

For example, we need to reinvent group homes but HUD, which funds and controls much of the stock of I/DD housing, does not work with CMS, which controls service eligibility. Neither are moving to correct this.

LOCAL LIMITS

Local zoning laws vary with respect to group homes. Each sets a limit on how close they can be to each other, such as not within a quarter mile. This is not based in state or federal law and is a misreading of the intent. Distance should not be considered at all. The basis for this misperception comes in part from the fact that local lawmakers don’t know our population. They equate our group homes with half-way houses for addiction recovery. The public also assume our adults are risky as well. Then local politicians are pressured by would-be neighbors who cry NIMBY (Not In My Backyard).

There are also local rules, fees, and consultant costs incurred for various local permits, environmental reviews, project reviews, and code checks. It cost one parent-led project about $40,000 (and a lot of time) just to get zoning and permits settled.

DEVELOPERS

Private developers who already have the experience, deep pockets, and connections naturally want their piece of the action, like a 10% cut to help you get a government loan, or a 20% profit from the sale of units. They also resist needed architectural changes because they cost extra, and they don’t “get” I/DD. For example, one was willing to reserve a floor in an apartment building for I/DD and another was willing to set aside an outlying segment of the property that would be reserved for an I/DD complex. While isolation might be preferred by some adults, the majority want a greater degree of inclusion.

Meanwhile, the usual large nonprofit developers–those who routinely build affordable housing–don’t necessarily “get” I/DD either. They are sympathetic, but I/DD is not their priority. There’s a hint that some may be coming around (e.g., Habitat for Humanity).

Then there are a few nonprofit entities (not from our state) that have built exciting housing for the I/DD community elsewhere. Yet when asked to build in our state, no matter what they tried the numbers didn’t add up for them to break even.

SUSTAINABILITY

Financing for parent-led housing is so scarce that many parent-led projects need to do perpetual fundraising just to keep the doors open. Donors wear out. So do parents. Our population should not have to beg to keep a decent roof over their heads. Charity to help begin a project is one thing, charity to sustain it for a lifetime is another. It’s demeaning to the adults and reflects poorly on the state.

The other key sustainability issue is that people’s housing needs change as they age. Old-age medical issues often show up earlier in our population, such a dementia. Aging in place may work for some if they can get in-home nursing care, but many will need care that can’t be provided in the home of choice. Many will still have active minds, and some will even be employed (e.g., via the Internet). Where are they going to live? A nursing home?

IN A NUTSHELL

There are 200,000 working age adults with I/DD in our state who need affordable housing. Every year more are graduating from high school and add to that number because our I/DD adults no longer die early. Warehousing is out of the question. If the state is to provide housing, which is its obligation, and do it soon without allocating many additional billions and billions of state dollars, then it must actively support independent, grassroots efforts.

Parents don’t know the jargon, or who needs to be chatted up, or where to look, or even what to look for. Untie the knots, trust us a little and give us the grace of flexibility, and help bring us together so parent groups don’t have to fumble forward alone.

NEXT ACTION STEPS

Convene:

1. Ann Oshel of Alliance Health has offered to convene a multi-agency group with parents to bring these barriers to the table and discuss them. This group could meet regularly and start by untangling one knot at a time. Use it to brainstorm.
2. Hold roundtables with developers and city/county officials to talk about zoning, permitting, etc. Ask them to identify local sources of funding. Do this in one location first (e.g., Durham, Chapel Hill, Charlotte, Clayton) and report back anything learned.
3. Ask Laura Wells of HOPE NC if she’d be willing to expand her Inclusive Housing Coalition group, which meets bi-monthly, and use the forum to mentor newcomers to I/DD housing of all sorts. If that’s not possible, create the forum.
4. Ask the Arc of North Carolina, the state’s single largest provider of group homes, and some of the larger providers like Monarch, to be part of a Zoom session to share their experience and knowledge.

Engage:

1. Sit down with Holly Riddle, who is just now retiring from the DHHS Olmstead office, to create a plain language explanation of what the federal laws say (Olmstead, HCBS, and the Fair Housing Act).
2. Sit down with Lisa Nesbitt and any others from DRNC to get to a shared understanding about what defines “quality community living” and agree on the features that distinguish I/DD from other disabilities.
3. Present our housing plight to the state legislature’s I/DD Caucus, first emphasizing that we’re not asking for a billion in new state funding (yet) and that the I/DD community is united in its short-term funding priorities: DSPs and Waivers.
4. Join the meetings of DHHS’ Housing Leadership Committee, which is about to issue the state’s first strategic plan for disability housing. It is a “living document”, so ask Josh Walker, who leads it, if a group of parents could offer their own strategic plan for I/DD housing.

Specify/Enumerate:

1. Collect and write down each specific barrier we’ve encountered and, where possible, with what it cost and how it turned out. This could be done in a forum setting.
2. Distill our case to one page of talking points and distribute it widely. Also distill our “asks” to one page that we can “hand on a platter” to state and local leaders.
3. Create a template for advocates to use in speaking with county officials that provides as much local data as possible (e.g., number of people in the county who are on the wait list).

Educate:

1. In each county possible, get more than one person to address the city council and county commissioners at their regular meetings. Educate them about who I/DD adults are as well as their needs, specifically housing. This will take more than the 3 minutes allotted to each public comment so plan on more than one person and more than one visit. Limit your ask to the powers they have at their disposal. They can’t raise DSP wages.
2. Meet one-on-one with the mayor and county commissioners. They don’t know anything about I/DD and they are the pool from which future state legislators are drawn.
3. Meet with both city and county housing staff. Educate them about the unique needs of adults with I/DD. Be prepared to quiz them about their criteria for awarding grants and plots of public land. Challenge them on proximity limits for group homes. Ask whether they could award extra points to disabled people appliying for public housing (maybe I/DD could get even more points since they are under-represented).
4. Meet one-on-one with your local elected representatives, both state and federal. They are more accessible than you might think. To send any message, such as to set up a meeting, be sure to copy their legislative assistant. Many rely on their LA to filter emails.

POSSIBLE MEDIUM-TERM SOLUTIONS

1. Designate a single voice of authority that can give expert advice we can count on as the final word and perform troubleshooting. This may require an ombudsman or a separate state division or department. Note that DHHS has a separate division to attend to deaf/blind issues. At a minimum, there could be a small state office dedicated to helping parents and nonprofits that are trying to build housing for adults with I/DD.
2. Challenge long-held assumptions about what is required by law. Talk in more depth with Representative Renee Price who is on the NC House Regulatory Reform Committee.
3. Create a single, widely accessible source of information, provided in plain language. It could be done through a website or a designated person in each agency. In that same vein, create a living document that spells out the steps and names the right contacts.
4. Support a permanent forum for parent pioneers. Note that New Jersey has a family-driven organization, “The New Jersey Parents’ Caucus”, a nonprofit funded by the state’s Department of Human Services and the office of Juvenile Justice and Delinquency Prevention. Its mission is not I/DD focused but the concept may work here.
5. Ask the four LME/MCOs to agree on the same definitions and procedures. The 4 remaining LME/MCOs have just formed an association, headed by Dave Richards of I/DD fame. Also ask them to connect successful and seasoned providers with newer ones, essentially setting up mentorship/consultant relationships. It may require incentives.
6. Ask the NC Council on Developmental Disabilities (NCCDD) if they’d be willing to focus more on housing in their next 5-year plan. See if it is open to issuing a multi-year RFP for a grant that promotes parent-led housing efforts.

CONCLUSION

Innovation is colliding with a rigid and siloed system that is, in effect, accessible only by large entities with deep pockets and lots of time.

We aren’t going to reach scale in less than 10 years, and the state eventually needs to pony up significant funding, but we can do some quick things around the edges in the interim. We should be able to get more transparency, consistency, easier and seamless access, and flexibility to “draw outside the lines”. This should be possible if we ourselves continue to be clearly intentional in meeting the spirit of Olmstead, HCBS, and the Fair Housing Act.

This shouldn’t be about checking the right boxes and making others feel good. We want what our adults want–choice, control, community.

SHORT DESCRIPTIONS OF PARENT-LED PROJECTS

Dave Curro, Midtown Housing Coalition:  Durham County. About 20 -24Tiny Homes on leased and purchased church land. Significant fundraising needed just to start. Will serve mixed disabilities.

Laura Wells, HOPE NC: Triangle. Large intergenerational housing complex, with 20% of the units set aside for I/DD and embedding a Community Engagement Facilitator.

Adam Barnes & Neal Sharpe, Peacehaven Community Farm:  Guilford County. Multiple units on a large rural acreage focused on social engagement and employment via a working farm & spin-offs.

Jeff Holland, My Forever Home: Johnston County. 10 houses on 10 adjacent lots in a large new neighborhood (“a community within a community”).

Eric & Barbara Levin, G House:  Orange County. Aiming for an integrated community of 3-4 houses on 7 acres. Each would have 3-4 I/DD residents, 2 live-in caregivers, and 2-3 additional residents. The I/DD residents would pay a monthly rent and use DSPs, through individual funding means, to pay for their chosen supports.

Margaret Gaffney, Indie Tree:  Mecklenburg County. Apartment buildings that are a cross between a college campus and assisted living, with a strong focus on job access and friendships with nondisabled seniors.

Laura Steed Lorino, L’Arche NC: Durham County. Single home of 6 people, where 4 I/DD residents live alongside resident assistants and volunteers. Intended to convey a sense of belonging and feel like a family. First of more to come.

Dee Marsh, Amongst Friends: Mecklenburg County. A cluster of dorm-like units built like a college quad for young adults with mild I/DD, emphasizing friendship, freedom and independence.

ACRONYMS

1. CFAC–Consumer and Family Advisory Committee. These volunteer groups advise LME/MCOs on service gaps and budget allocations.
2. CMS–Centers for Medicare and Medicaid Services. This federal entity, based in Atlanta, issues the rules governing who can get Medicaid, and how. NC Medicaid works with CMS to get new ideas approved, and interpret the rules as given.
3. DHHS–The North Carolina Department of Health and Human Services. It has at least five divisions that impact I/DD: MH/DD/SU/TBI (the primary division dealing with policies affecting serious Mental Health, Developmental Disability, serious Substance Use, and Traumatic Brain Injury), DHB (Division of Health Benefits aka NC Medicaid), DHS (Division of Health Services Regulations), the Division for the Deaf and Blind, and Vocational Rehabilitation (now clumsily renamed the Division of Employment and Independence for People with Disabilities).
4. GDP–Gross Domestic Product. This is a standard measure of income generated by work.
5. HUD–U.S. Department of Housing and Urban Development.
6. HCBS–Home and Community Based Services. This is a category of Medicaid service with the intent of delivering services in the least restrictive setting. It is a Medicaid rule.
7. I/DD-Intellectual and/or Developmental Disability. This covers people with an IQ below 70 and people with a physical disability such as cerebral palsy and muscular dystrophy. Almost all are born with the disability, but a few acquire an intellectual disability as a child from brain surgery.
8. LME/MCO–Local Management Entity/Management Care Organization. The state passes Medicaid money through four that cover the state. LME/MCOs are now known as “Tailored Care Plans” that serve only qualified people with a mental health problem, I/DD, or a traumatic brain injury substance, plus those in substance use recovery. This is not to be confused with a person’s own “Tailored Care Plan” which lays out what services they can get.
9. NC Medicaid–Shorthand for North Carolina’s DHHS Division of Health Benefits (DHB).
10. NCHFA–North Carolina Housing Finance Authority.
11. Olmstead–This is the name of the landmark Supreme Court decision, in 1999, that mandates the deinstitutionalization of people with disabilities. It was brought against the state of Georgia by two women with ID, and no mental health issues, who were locked for years in a large state psychiatric institution.
12. SSI & SSDI–Supplemental Security Income and Social Security Disability Insurance. These are monthly payments to the disabled person over the age of 18. SSDI can also go to a child if the bread winner dies or becomes disabled before the child is 18. The rules for getting and keeping either of the checks are very complicated, especially for SSDI, as is the addition of Medicare to Medicaid after attaining SSDI.

[1] I/DD stands for Intellectual and/or Developmental Disabilities. Other acronyms in this paper are list at the end.

[2] Carol is a parent of an adult son with a significant intellectual disability who currently lives in an ICF group home. She co-led the planning group for the CFAC workshop and wears many hats in the state’s I/DD advocacy world.

[3] DSPs (Direct Support Professionals) are paid wages that are lower than those paid to fast food workers. DSPs have hard jobs–they don’t just stand there and flip burgers. Wage rates are set by the state legislature. Note some Medicaid based rates proposed by the state must first be approved by CMS before going into effect.

[4] It gets more complicated. Under some circumstances, earnings reduce the Social Security check and act as a disincentive to work, which also happens to be a source of pride and community belonging.

[5] Most group homes were built decades ago as the fresh answer to deinstitutionalization. They are aging and many are no longer in desirable locations. HUD, which funded them, allows a pittance for upkeep and does not allow the “relocation” of a home. With current reimbursement rates group homes are generally unsustainable with fewer than 5 residents, yet CMS has issued a new directive that no new group homes can be built with federal dollars if they have more than 4 residents.

[6] There are about 350 ICFs in North Carolina, with roughly half in 6-bed group homes that are located in a neighborhood, and half in larger facilities that come with on-site nursing and other therapists. But for the rare exception, ICFs do not house adults with mild or no intellectual disability.

[7] From a parent email dated 6-28-24: “Our 38-year-old daughter is currently transitioning to a group home in Greensboro. We tried in vain to get something near us in Cary and worked with a consultant to do so. The Greensboro home was the only opening we found after a year-long search. Our daughter is safe, but there are several aspects that make it an increasingly challenging to feel good about it. Our daughter has been on the Waiver waitlist for 10 years and, last we checked, was still about 8 years out.”

[8] Baby Boomers were the first generation to NOT put their babies in institutions.

[9] One would include a “grab and go” option for those who wish to take a snack and skip a mealtime.

[10] For instance, an IRS benefit managed by NCHFA gives the developer a 4% tax credit. These is the best government source for allowing flexibility as to who is housed, and at what income levels, for large developments. You can stretch out repayments far enough to make financial sense. Most public housing authorities require 10 or 20% of the units to be affordable, but the rest are unrestricted. This allows parents to move into market-rate units and live close to their adult child.

[11] At least two parent-led projects have been refused private liability insurance, which is needed even before construction begins.

[12] It was issued in 1999.

[13] The Home and Community Based (HCBS) Settings Rule is a regulation issued by the US Centers for Medicare and Medicaid Services (CMS).

[14] Oddly, the waivers give states permission to NOT institutionalize people with disabilities, and allow them to instead deliver Medicaid funded services in a Home and Community Based Setting (HCBS).

[15] The state originally proposed a limit of 3 beds but blowback from providers got policymakers to increase it to 4 beds. It is extremely difficult to cover costs with less than 5 beds, and the state did not bump up the Medicaid reimbursement rates to help balance the books.

[16] Staff at NC Medicaid have advised that any sharing of DSP staff across a cluster of group homes will be viewed as de facto proof of resident isolation and thus rejected by CMS. Why can’t DSPs be shared in close proximity when the settings are otherwise meeting the spirit of Olmstead, especially given the extreme shortage of DSPs which results in frequent missed shifts?

[17] LME/MCOs are the state’s pass-through mechanism for distributing Medicaid funds that provide services to adults with I/DD. In becoming an accredited provider, you not only need legal advice on how to conform with Medicaid regulations, but you may also need it to figure out the LME/MCO’s manual and procedures.

[18] Licensing and Medicaid reimbursement are separate actions, happening in separate divisions. If you also seek Special Assistance (funds provided by the state through county Departments of Social Services) you are classified as an “Adult Care Facility” which provides different reimbursement rates and carries a negative connotation at the local level (e.g., viewed as a half-way house). Moreover, if any of them are private-pay residents (those who lack the Waiver) they can only be charged that same low state rate, making the home financially unsustainable.