Published on: Jun 23, 2023

In April 2023, DRNC began a process of engagement with people connected with the ICF system in NC. Our intention in gathering this information was to identify ways people with I/DD can live in the highest quality, most integrated way possible. We want to learn from others’ experiences and to make recommendations to improve quality and integration for all people living in ICFs. DRNC gathered information by meeting with individuals living in ICFs, family members, ICF providers, public guardians, and LME/MCOs. DRNC also administers an online survey to collect relevant feedback. While the questions posed to different stakeholders vary, they can be summed up as: 

  • What are the features that people value in a particular ICF, what made them choose it, and what makes a particular ICF setting high-quality and/or integrated? 
  • What would it take to ensure that every individual with I/DD has a high-quality, integrated setting? What are the barriers?  

DRNC is gathering this information because even though they fall in the same licensure category, not all ICFs are the same. The ICF designation simply means that certain funding streams and regulations apply. As with any setting or living arrangement, the real question is whether residents have the opportunity to live their best lives. Is the care high quality? Are there enough opportunities to be out in the community? Do they get to make choices about the things they do in their daily lives? 

We know that ICFs have a more reliable funding model than settings like HCBS or Innovations Waiver group homes. We also know that some group homes do not live up to the promise of integration. This initiative seeks to identify ways to ensure that all people with disabilities have access to the same quality and integration no matter what “type” of residence they live in.  

The following is a summary of what we have heard so far, along with preliminary recommendations and proposed next steps.   

Common Themes 

  • Mission-driven organizations and committed staff are the main drivers of quality.  
  • Stability and access to 24-hour support are key for families and non-family guardians. 
  • There is a desire for more individualized community engagement. 
  • Current regulation of ICFs focuses more on technical compliance than actual quality. ICFs and their residents could benefit from proactive guidance rather than citations for non-compliance.  

 

Summary of Input  

DRNC promised participants that we would not quote or identify them without prior permission. We asked people to be open with us and are aggregating the comments to keep that commitment. Below is a summary of feedback so far regarding the choice of a particular ICF, the positives of the setting, areas for improvement, and barriers to quality and integration.  

Reasons for Choosing Specific ICFs 

Families of people in ICFs identified stability, access to medical support, and all-inclusive 24-hour care as important features when selecting their family member’s ICF. Many felt that the ICF was a home, and there was a general sentiment that these are community environments – both the ICF itself and the integration of the home into the surrounding community. Some parents had had to take what was available initially before finding a better setting, and there had been some potential neglect that caused one parent to seek another option. There was some sentiment that there should be cameras in the ICFs so families can monitor for safety and just for information. For some, their experience with an ICF stood in contrast with their experiences with community-based services, which had been unreliable. Families felt that trust must be built and maintained with a provider, although there was still a sense that it was important for family members to remain engaged. There was a sense of stigma in having a loved one in an ICF that weighed on some family members, including a sense that DRNC has added to that stigma. By contrast, ICF staff don’t make parents feel that way. 

For non-family (i.e., paid or corporate) guardians, the primary consideration in selecting an ICF is sometimes simply what’s available. Often, they are called in to provide guardianship for people who have been rejected by group homes or have other limits on their options; the ICF provides all-inclusive care and receives more funding than an HCBS group home. An LME/MCO representative noted the unequal funding between ICFs and group homes, and the fact that many group homes will reject residents based on behaviors that are perceived to create liability or risk of regulators concluding that the individual should not have been accepted; these factors make the ICF a more viable option in many cases. It was also noted that some people use ICF placement as a path to Money Follows the Person, meaning that some of the placements are intentionally temporary. In some cases, an available placement is the last resort to get someone off the street and keep them safe, or to calm down a crisis with routine and structure. For some, it’s what is needed and works well as a permanent home. 

Among residents whose preferences we were able to discern, most indicated a desire to go out more. Some indicated a desire to live elsewhere. We are working to ensure that these individuals have a chance to explore their options and make an informed choice. These requests are consistent with indications from some non-family guardians of some residents wishing to live elsewhere. These requests are also consistent with the residents who have contacted DRNC, through our intake process or through our monitoring in facilities and express a desire to move.  

Characteristics of Quality Settings 

The most common response about what made a particular setting high-quality was that staff are caring and truly want to provide a good experience. It is important that staff are both well-trained and have worked at the facility long enough to have developed individualized knowledge about the residents. Other identified markers of quality are that staff are competent, have a passion for the work, engage in continuous learning, and earn competitive wages. Some, including providers, felt that quality and integration are driven by the organization’s mission and the extent to which the provider is motivated by a desire and willingness to spend more time to elicit and respect residents’ individual choices. In this regard, there was some discussion of the differences between non-profit and for-profit providers, including the potential for investment firms to buy up more providers, and what that might mean for quality. Non-family guardians indicated that the best experience is when the individual has the choice – e.g., whether they want to go to a day program and if so, which one. 

Public guardians and LME/MCOs considered individual choice – including with regard to going out in the community – to be a marker of quality in an ICF. Choice also includes a person-centered approach to other activities within the home, such as participating in meal preparation. Some parents wanted to see more volunteer opportunities or activities with a purpose (e.g., Meals on Wheels). When people have choices, that’s the best-case scenario, including choice when it comes to doctors, dentists, or other providers of care. Across focus groups, the point was made that many ICF residents get to decorate their own bedrooms. Non-family guardians pointed out that ICFs are consistently clean and do not have the odors sometimes found in other settings.  

Quality also includes, for some, having the structure and training to enable an ICF to accept residents with behaviors that had caused discharges or denials elsewhere. One corporate guardian noted that it matters who the QP is in the home; some are really involved, and some are very limited in what they will do. 

Although there has been an emphasis on small ICF settings, some family members expressed a preference for a larger setting because of access to more staff and medical support. It was noted that critical medical care is not available in the community in many rural parts of the state. For some, the larger ICF itself serves as a community. From the perspective of an LME/MCO, there are some areas, particularly in rural parts of the state, where adequate medical support is only available in a large ICF. Some indicated that they would like to see more ICFs specialize in providing services to those with higher medical needs, noting that residents range from those who use vents and require 24-hour monitoring, to those who leave to go to work every day.  

Areas for Improvement 

Family members’ most commonly reported area for improvement was to increase opportunities for individualized outings. Group outings decreased during COVID, but there appeared to be a sense that there was a movement back toward pre-COVID activities. There was a clear sense that the ICFs and staff would be willing and able to provide for more individualized community engagement if the funding was available. Some families indicated that they were the ones who provide individualized community outings, and there was concern about who would provide that support when parents are no longer able to do so. 

Although the context of the focus groups was on identifying the characteristics of quality providers, the contrast with lower quality ICFs was raised in a number of ways. Lack of quality staffing and lack of engagement were the dominant distinction. Staff training was another, including the need provide for training other than basics like CPR. A significant equity concern was raised regarding the disparity between those who can advocate for themselves, or have family advocates, and those who do not; the latter do not get high quality service or choices but are “put on the back burner.” This is consistent with DRNC’s monitoring work, which often identifies significantly less satisfaction among those who would prefer, but have not been able to advocate for, better settings.   

Barriers to Quality and Opportunities for Community Integration 

The barriers to quality and integration included some expected responses, primarily around money, funding structures, and staffing levels and training. As noted above, lack of funding reduces the ability of staff to provide for person-centered community engagement. There was also a sentiment that quality is not being measured or incentivized. Mixing people with different needs creates disparities. Raising ICF wages has different implications for providers who also operate Waiver group homes; if rates are higher in the ICF, Waiver staff may opt to migrate, creating staffing imbalances. As a result, a provider may need to lose money on the Waiver home to maintain staffing stability.  

Another barrier is the funding model itself, which also limits choice because the ICF does not get paid unless the resident is engaged in specific activities (e.g., the day program). This means that residents can’t retire from the day program. Vacation days mean that the provider does not get paid, creating a disincentive for the ICF to encourage family trips and the like. As one participant put it, we don’t see meaningful days and person-centeredness because we don’t pay for it, focusing instead on regulatory compliance. There is a lack of flexibility from a regulatory perspective, making it hard to pilot new options. There is a need for more forward-thinking approaches.  

Planning Considerations 

Participants noted that it is the economies of scale in larger settings that make them viable, particularly when daily medical supervision is needed. One suggestion was to provide for specialized rates for behavioral and medical needs. Other suggestions included the use of assistive technology as a supplement to staffing (e.g. overnight), which would require some changes in requirements at the federal level.  

In one LME/MCO catchment area, the average age of ICF residents is in the early 60s. There are fewer younger people entering ICFs, and most of those are there because they have no access to the Waiver, or their parents do not have the capacity to meet their needs. In some cases, it is because DSS got involved. Parents who are in their 40s-50s and younger want their son or daughter to live in the community. The older the parents get, and the less stable the community service options, the more concern they have about who will make sure they have services in the long run.  

Recommendations 

Based on the above, DRNC is publishing the recommendations below. Note that these recommendations are not directed at anyone or any entity. We strongly believe that there must be a genuine and collaborative effort going forward, and we are happy to be convenors. But ultimately, any changes in funding or regulation – or culture – will require a community consensus and community effort. 

Engagement Among Families 

Families who participated in our focus groups expressed a strong desire to connect with each other. This could be at the individual ICF level or more broadly among ICF families.  

Key benefits of organizing as families could include: 

  • Information sharing 
  • Moral support 
  • Informal oversight (e.g. identifying concerns, or problematic facilities) 
  • Mutual aid 

The families who want to connect should drive and sustain this effort.  Because of HIPAA and state regulations, families will need to connect without the assistance of facilities or state agencies providing contact information. DRNC is willing to be a preliminary clearinghouse for people who want to connect. If that’s you, please email: lisa.grafstein@disabilityrightsnc.org.  

Once there are several families connected through DRNC, we will ask that a point person be designated to coordinate the effort.  

Quality-Based Regulations and Oversight 

Oversight of residential facilities should address the quality of the facility and the quality of life of residents. It should not just be a check list of physical and programmatic requirements. Regulation and oversight should be aimed at supporting environments that facilitate full and rich lives. Qualitative oversight should identify ICFs that are low quality and/or fail to ensure meaningful days, and then ensure remedial measures are taken.   

One option is to transition to quality, integration, and person-centeredness measures in DHSR oversight. Another option is to require or incentivize CQL Certification or some other process that has a record of improving quality and integration. This could include payment by LME/MCOs for certification and an enhanced rate in addition to the cost of certification. 

Oversight should not just be hindsight. DHSR, state staff at the DD Centers, and potentially additional entities can and should help residential providers trouble-shoot issues and provide proactive support. An example from one of our sessions was a nutrition consultation for a resident with diabetes, rather than an admonition after the individual suffers consequences of an inappropriate diet.  

Differentiating For-Profit and Non-Profit Providers  

Small – or even large – non-profits are generally mission-driven. They do not have to turn a profit to pay out dividends or satisfy shareholders. They can make the choice to pay more to support an individual whom a for-profit entity might view as an economic “loss.”  

While it may be difficult to devise a way to make a distinction, there is good reason to look at ICFs differently based on whether they are non-profits or are being run to make a profit. This is particularly true when it comes to the prospect of out-of-state investment firms or private equity firms buying up providers. This has happened in other caregiving settings, and it appears that it is starting to happen in the context of ICFs. In other states, these types of transactions have resulted in lowered quality and poorer outcomes. If there is a way to prevent that from happening to North Carolina ICFs, it is well worth exploring.  

Develop Models of Funding that Promote Quality and Individualized Community Engagement 

No matter the residential setting, each individual should have as much opportunity as possible to do the things they love and go to the places that they find fulfilling. This is the essence of a truly meaningful day. Cost and staffing are the key components – and key barriers. The current model is that residential staff provide for community engagement, making it nearly impossible for many ICFs to provide for individualized, person-centered community engagement.  

Funding models can either incorporate higher rates, provide premium rates that incentivize (and make possible) a person-centered approach, or provide for a separate service that is overlayed. The latter may require addressing limitations in Medicaid rules about payment for different services at the same time. Collaboration with local non-profits could also allow for more volunteer opportunities for residents.  

These are a few ideas. A genuine, sustainable model is needed to address this core shortcoming of the current system.   

Ongoing ICF Stakeholder Engagement 

Many people we engaged with across sectors have had critical information and creative ideas. We met with a small sampling in each group, which suggests that we have only scratched the surface.  

DRNC suggests setting up ongoing conversations. More on that below.  

Now What? 

First, we would like feedback on the above. What did we miss? What resonates?  

Next, DRNC is exploring ways to develop – and fund – a long-term engagement process that can flesh out solutions. While many people feel that specific ICFs are the best place for them or their loved ones, there are far too many examples of inappropriate placements in lower quality facilities. Even those with the highest level of satisfaction would like to see more community engagement and staffing stability. As a community, we have to demand more.  

We said above that our recommendations are not aimed at anyone. They are for discussion and expansion, and ultimately for spurring improvements. A community effort is needed to gather the best ideas and keep up the momentum to carry out meaningful, lasting change.  

We don’t yet know exactly what this next phase will look like. We are reaching out to potential partners to facilitate discussions. What we do with those discussions, and how those recommendations turn into real action, will depend on how invested everyone is, how creative we can be, and how hard we are all willing to work to improve our system for this generation and future generations.