Part 2. Certified and Non-Certified housing

In this section we will discuss the difference between “Certified” housing and “Non-Certified” housing in NY State. We will review different types of housing options such as Supportive, Supported and Affordable housing as well as Shared Living and Intentional Communities.

“Certified” or “Licensed” Housing?
In 1974[1] the federal government addressed a mounting financial and programmatic crisis in state institutions by permitting states to create smaller settings for people with I/DD and others. In addition, this change was often driven by litigation against state institutions. These settings began with utilizing Skilled Nursing Facilities (SNFs), first created in 1970, [2]but as it emerged that the majority of people did not need the SNF level of care, states were permitted to create Intermediate Care Facilities (ICFs). These facilities were governed by rules and regulations set at the federal level, but the federal government devolved the task of enforcing those rules and regulations to the states. States in turn “certified” that these residences complied with federal standards. In 1981 with the advent of Medicaid Waivers and as it became clear that ICFs were expensive and that many people would do well in less restrictive settings, states were permitted to create smaller, less regulated settings. In New York these became known as Individualized Residential Alternatives (IRAs). Services and supports were to be unbundled and made more personalized, person-centered settings could be developed. Generally, IRAs were smaller than ICFs and with fewer residents. IRAs were also made subject to certification for any number of reasons but the primary one being that the state’s contribution to Supplemental Security Income (SSI) rate is significantly higher for a person in a supervised congregate setting. The “Family Care” option, a model of adult foster care was also brought into the certified system eventually. ICFs, IRAs and Family Care settings may be operated by the state itself or by nonprofit provider agencies, sometimes called “voluntary” agencies.

The average ICF in New York is home to ten people.[3] There are several in the state that house more than forty people. Most IRAs are home to five or six people but there are some with as few as one or two people. Family Care host families may have up to four people in the host home now but in the past could house more.

In the past, people with I/DD or their advocates would put their name on a “waitlist” that would eventually lead to a placement in a certified group home. Families believed that this placement would take care of their son or daughter’s long-term health and safety and that they would not need to worry about what might happen when they were no longer able to care for their child.  In recent years, and for reasons we will discuss later, the state reduced the number of new certified group homes it would fund. This reduction in supply resulted in the growth of the waitlist of people seeking certified housing. By 2011 the waitlist had grown to almost 12,000 people statewide, and New York was not the only state faced with the issue. The federal Centers for Medicare and Medicaid Services (CMS) which oversee Medicaid funding advised states to understand and better clarify their waiting lists. In response New York State passed legislation requiring OPWDD to gain a more detailed understanding of the needs of people on the waitlist in order to understand long term housing needs. In February 2016 OPWDD published its “Report to the Legislature Residential Request List”[4] a thorough review of the waitlist. One outcome from the report was the creation of the Certified Residential Opportunities (CRO) protocol which initially created a numerical priority scale but in June 2016 identified three levels of housing need:

  • Emergency Need – when someone is in imminent danger of homelessness or otherwise at great risk,
  • Substantial Need, to include people whose family members are no longer able to support them and people returning from Residential Schools or Development Centers, and
  • Current Need for people whose housing needs are not as pressing as the first two categories.


For the most part “beds” only become available when a resident dies or moves into a non-certified setting. In 2017 Governor Andrew Cuomo announced plans to create 459 new certified beds over the next several years to meet demand, but given the level of need this will likely only provide support for people with very high levels of need who are in the Emergency or possibly Substantial Need categories. Given the reduction in capacity, opportunities for certified housing are limited and likely to remain so.

“Family Care” is the oldest of OPWDD’s community-based residential programs, founded in the 1930’s, and originally intended to move people from institutional settings into the homes of people living in the community adjacent to the institution, mostly Direct Support Professionals (DSPs) who worked there. The provider family cannot be related to the person. Since those early days the program has since been adopted by voluntary providers, and there are now two parallel programs, one operated by the state, State Operated Family Care (SOFC), and the other by the voluntary providers, Voluntary Operated Family Care (VOFC).  Family Care residences are certified by the state. Family members are trained and oversight is provided by the state itself or by voluntary providers funded by the state.  Family care providers are paid a (tax free) stipend for each resident, with a maximum of four residents to a home.[5]  Family Care operates successfully for many people, but some express concern that it can be akin to “Adult Foster Care” and that there is something amiss when families cannot receive support for their own son or daughter in their own home, while such support would be provided to a non-relative. This latter concern is increasingly relevant now that the IRS has ruled that “Difficulty of Care” payments, i.e. in-home support funding, may be made to family members, including parents.

Non-Certified Housing
This is a term that is used to describe any home outside of the certified system, -namely, a home like any other! These homes may be in apartments or houses, co-operatives, condominiums, owned by persons, agencies, families or corporations. In other words, places where the typical population lives. It may be home for one person or more, they may share with other people with disabilities or with people without disabilities. There are typically fewer people than in a certified setting. Non-certified settings are not required to go through a Padavan process but they may have to contend with local “grouper” laws.[6]

For people whose support needs do not warrant placement in a certified setting there are opportunities to create non-certified housing using Self Directed Services (SD) funding and other sources of funds. In parts of the state where regional administrators and provider agencies have been proactive non-certified housing is now being created at a higher rate than certified housing and state and other systems are adapting to the new model. In other parts of the state with less “buy in” from providers and perhaps more expensive housing, it remains extremely difficult for families lacking skills, experience, funding and support from OPWDD to create workable sustainable housing on their own.  Even with support it can take years of hard and sometimes frustrating work to create a sustainable home.

What are the differences between Certified and Non–Certified houses?
In meetings and surveys families have expressed a preference for certified housing, and for “traditional” group homes. (It is worth noting that the “tradition” only dates back to the deinstitutionalization changes of the 1970’s and 1980’s). There is a presumption that such a setting will ensure the health and safety of their son or daughter when they are no longer able to provide needed support.

OPWDD’s 2016 Report to the Legislature surveyed the families of people with I/DD who were on the “waitlist” for housing.  The report noted that “a majority 62% of those surveyed”, (95% of whom were caregivers) “indicated interest in a traditional, agency staffed Certified model”. A small majority of the people surveyed in 2018 as part of the creation of “What Happens when I’m Gone?”[7] also stated they looked for certified housing, some stating that their son or daughter needed “24/7” support. Given the differences in funding, regulation, staffing and siting issues it is important that the types of certified settings and non-certified settings be understood.

The principle differences between certified and non-certified housing lie in their different oversight and funding.

Oversight and Regulation
Certified settings are subject to regulation under New York ‘s Mental Hygiene Law, principally Parts 624 (Incident Management), 625 (Events & Situations), and 633 (Protection in Certified Settings), of the Codes, Rules and Regulations of the State of New York (NY-CRR Code[8]). Operators are required to report incidents considered minor to the provider agency’s “Incident Review Committee”, more serious incidents in some cases to OPWDD, and most major incidents to the state’s Justice Center[9]. They are subject to in-person inspection by OPWDD’s Division of Quality Improvement (DQI) at least annually. The audit is designed to ensure that housing is healthy and safe and provides a positive quality of life. While the latter is difficult to audit, the tool used[10] is well crafted, requires significant training to administer and is sensitive to the need to focus on persons, even if the home in question has a large number of people living in it. Staff in certified settings and related professionals are considered “Mandated Reporters” and required to report any abuse or neglect. If a person is living in an IRA or in Family Care, they will also have the support of a Care Manager whose job includes monitoring for health and safety.

Certified settings are considered to be highly regulated. However, there is a persistent myth that non-certified settings are not regulated and that protections are not in place for residents. This is unfounded. Non-certified settings that receive funding through OPWDD are subject to parts 624 and 625 in reporting incidents or abuse. The Justice Center does not typically address incidents in non-certified settings, but does conduct background checks for any person who is to be employed by a provider agency, or a fiscal intermediary and who will be providing support to people with I/DD. Virtually all non-certified homes receive funding for rent support from either Tenant Based Rental Assistance vouchers (Section 8) from the Department of Housing and Urban Development (HUD), or through OPWDD’s Housing Subsidy program (formerly known as both Individual Supports and Services (ISS) and Self-Direction housing subsidy).  In some instances, a person may be eligible for both although if receiving Section 8 the person’s OPWDD subsidy will be limited to $50.   HUD requires that housing purchased with Section 8 vouchers meet their standards of safety and quality.

Depending on the OPWDD region that is administering the Housing Subsidy funding, Quality Assurance documentation and Funding Criteria may differ, but all of the Developmental Disability Regional Offices, (DDROs) require that the Housing Subsidy provider develop a Person Support Services[11] plan that addresses the types and nature of services, the responsibilities of the agency managing the ISS contract and those of the person benefiting from the subsidy, and the nature of the support network. There must be a Participation Agreement[12] which commits the agency to safety and quality standards and oversight and a Quality Assurance checklist[13] covering home safety and support which is reviewed annually.  In many cases, non-certified settings are either operated, managed or owned by provider agencies who apply their own standards, frequently more exacting than those of part 633 and 624 and include the same incident reporting features as they do for their certified settings in part because it is administratively simpler to apply one set of best practices across all of the homes they operate or support. Most people living in a non-certified home who are receiving OPWDD waiver services in addition to the rental subsidy will be receiving Care Coordination from a Care Coordination Organization (CCO). In July 2018 CCO services began to replace Medicaid Service Coordination (MSC) support. In addition to ensuring access and compliance with Medicaid services CCOs monitor and coordinate health care.  If the person is receiving SD services, they will also have a Support Broker who is paid to ensure among other things that their housing is safe and healthy and that their bills are paid. Their funding will be channeled through a non-profit Fiscal Intermediary who is paid to also ensure that their obligations are met and their budget adhered to. It could be argued that in many non-certified settings the amount of oversight is more transparent and diversified than it is in a certified setting.

HCBS Settings Rules
In January of 2014 CMS, the federal Medicaid oversight agency, published the Home and Community Based Settings (HCBS) rules.[14] The “Settings” rules provide a series of standards that states receiving federal contributions in Waiver funding, which includes Community Habilitation (CommHab), should apply to residences and workplaces. States must also follow the Person-Centered principles of Section 2402 (a) of the Affordable Care Act. The rules are predicated on research based[15] factors that lead to an enhanced Quality of Life for people with I/DD. Community Habilitation which is the HCBS funded service that pays for staffing for most people in non-certified housing is a Waiver service and is subject to these rules.[16] OPWDD’s Toolkit for HCBS settings is a helpful guide for agencies and families should also be familiar with it.[17]  What CMS requires is that if a setting has “institutional characteristics” it be subject to “Heightened Scrutiny”. OPWDD’s Heightened Scrutiny reviewing protocol is available under the heading “Heightened Scrutiny” on the toolkit, although the review function is currently being performed by the State Department of Health, not by OPWDD. More information about what Heightened Scrutiny is and what it isn’t is available at the CMS website.[18]

Standards for Person-centered Planning and Self-Direction in HCBS programs
In June of 2014 the Secretary of Health and Human Services issued “Standards for Person-Centered Planning and Self-Direction in HCBS Programs” per the Affordable Care Act. These standards require that “Employment and housing in integrated settings must be explored, and planning should be consistent with the person’s goals and preferences, including where the person resides, and who they live with.”[19]

Funding
Certified ICFs are funded through “State Plan” Medicaid. IRAs are funded through the State’s Medicaid Waiver. Historically each resident had an assigned budget however in the mid 2000’s rates were “rolled up” so that the provider agency received one “capitated rate” to cover all of the residences it operated. These rates were based on historical budgets with Cost of Living increases annually. Intended to simplify administration this has also had the unintended consequence of making it more difficult for people to leave certified settings for other options. This is because the people most likely to leave non-certified settings are people with moderate needs, while those coming into the certified settings are more likely to have a higher level of need. Because providers have to lobby hard and long to have their rate increased to reflect this increased need, they may be lacking in motivation to help people to move from their certified setting. 

People living in Non-Certified housing typically (but not always) have individual budgets that provide for residential support through the Housing Subsidy, and may also provide for staffing through CommHab. Staff are paid through the Medicaid Waiver funding model. (We will describe Medicaid Waiver in Part 4 of this guide). CommHab regulations require that staff report activity in 15-minute increments. Residents of all types of housing receive Supplemental Security Income (SSI) with those in certified settings receiving enhanced rates through the Congregate Care Supplement.[20] The Congregate Care Supplement that supports a person in a certified setting but not someone with the same needs who is living in a non-certified setting is an example of institutional bias that needs to be addressed. Some people with I/DD receive Social Security Disability Insurance, (SSDI) through their own work history or as Childhood Disability Benefit (CDB) from their parents’ retirement. Most will receive Supplemental Nutritional Assistance Program (SNAP) funding, and possibly Home Energy Assistance Program (HEAP) funding. All of these funding sources will be examined in Part 4. “How Independent Housing is Funded”

The Need and Reality of “24/7” Care
It is worth noting the costs involved when different options are available. A term often used when discussing residential options is the provision of “24/7” services; sometimes this includes “1 to 1” support. The term is shorthand used to convey that a person needs a significant level of care, but is a term that should not be taken literally, or implemented lightly. The greatest cost component for LTSS is labor cost. Since 2018 any organization employing more than 11 people in New York City is required to pay a minimum wage of $15 per hour, and the minimum wage throughout the state will gradually increase over the next several years.[21] Including even basic benefits, training and compliance time, supervisory overhead, turnover and other management time the cost is closer to $20 per hour. One-on-one 24/7 care at $20 per hour would cost $174,720 per person annually. Not everyone needs this level of care. A more typical staffing pattern for a person with a high LTSS need might be sharing staff with two other people and attending a (separately funded) day program or job for six hours daily. The cost of the housing component of such an arrangement would be $20 x 18 hours x 5 days a week and 24 hours for 2 days at weekends for x 52 weeks a year, = $143,520 or ÷3= $47,840 per person. If the person does not require someone to be awake overnight and can be safe and secure as long as there is a Live-In Caregiver(LIC) who is asleep at night but ready to act in any emergency then the cost is further reduced – perhaps 10 hours of housing support (independent of any day work or program) per weekday and 16 hours per weekend shared by three people would cost $85,280 or $28,427 per person. Every hour matters.

It goes without saying that given the demands of the work, all stakeholders need to find ways to improve hiring, training, rewarding and retaining people who work as DSPs. Such demanding work merits greater status. The higher level of skill, the lower the necessary staff ratio, and the more effective the care.

Are There Economies of Scale in Larger Settings that Make them more Sustainable?
Costs of housing and other LTSS vary across populations based on many factors - their level of support, where they live, who with, their own resources, history and medical needs. Pinning down the relative costs of different living environments is complex and research is not conclusive. It is clear that as people moved from institutions the costs for their personal care declined and the per capita costs of the people remaining in the institution increased due to the static facility costs. Equally true is that as people become more empowered to advocate for their community-based services, they are in some cases seeking higher levels of support. However, it is clear from research and experience that the following seem to be generally true:

  • When comparing levels of need arrived at using the Developmental Disability Profile (DDP) score, and the budgeting acuity scale of the Individual Service Planning Model (ISPM) it appears that people with moderate levels of support needs may be as well or better served in non certified settings than in certified settings, although the population in certified settings is likely to be older.
  • HCBS services are substantially less expensive than ICF services, evident for all comparisons involving similar person recipients. For HCBS recipients living in congregate settings, expenditures were above average compared to those recipients in non-congregate settings. [22]
  • Given the option of directing their own budget themselves or through their advocate, people tend to spend less than the cost of a congregate facility[23]
  • As the number of people living in a house increases past a certain point the number of staff in ancillary roles increases, e.g. cooking and cleaning are no longer DSP or resident tasks, such that past a certain level costs per capita actually increase rather than shrink. “Diseconomies” of scale begin to take effect.

 

The Perspective of a Person Living in a Certified Setting or a Non-Certified Setting
The best certified home would feel little different from the best non-certified home for the same number of people. It would feel like a home, not a mini-institution. There are several important differences however:

  • A certified home is likely to have more residents. Of people living in certified settings the average number of people living in an ICF is 10 people, with some housing many more. This is often due to pressure from the state to reduce the waiting list and “add one more person”. In a Supervised IRA the average is 5.5 residents[24]. We know that the more people living in a setting, the more likely they are to feel loneliness,[25] or experience bullying and a compromised quality of life. In research conducted at Brigham Young University and since replicated it became evident that isolation and loneliness reduce life expectancy.[26]
  • A certified home is likely to have more staff who are engaged in support functions such as cleaning and cooking. Non-certified homes will be more likely to have the residents performing a share of the chores
  • A certified home may be more likely to have people sharing a room. Of the Family Survey respondents in certified settings 63% shared a room.
  • A certified home may be governed more by schedule and routine than a non-certified home. The schedule will tend to be built around the shift staffing model. Life is governed by the need to feed, bathe and medicate up to ten people. Travel outside of the setting is limited by the availability of a van and the number of staff available, and it is unable or unlikely to be individualized.


Early indications are that staff turnover in smaller settings is not as acute. Nationally, the turnover rate for direct support staff is 45% annually. It is very difficult for people to form relationships with DSPs given this type of turnover. This broken connection to society represents a loss of humanity that is worsened by the very intimate functions that some people need support for. In the more segregated settings, it is unlikely that a person with a high level of need will have contact with anyone who is not paid to provide support, or is likely to be around for long.

The Future of Certified Settings
The “24/7” setting was designed to provide low-risk healthy and safe housing that was better than the institutions it replaced. In many ways it succeeded admirably, there is no comparison between a well-run certified group home and historical institutions. However, the model’s success has come at a high cost in loss of liberty, in a controlled and perhaps impoverished quality of life for the residents, and at a high financial cost. What does the future hold? Rahm Emmanuel, former mayor of Chicago, famously said “Never let a good crisis go to waste”. While the shortage of housing and the need to transition from certified settings to more non-certified settings is not yet seen as a crisis, a critical mass of factors is driving policy makers and funders to engage with alternatives.

  • We know that certified settings are costly and tend to increase isolation and segregation.
  • There is a growing body of research that reports that smaller, more integrated settings lead to a better quality of life for the people who are supported.
  • Research shows that smaller settings tend to cost less.
  • A series of legislative and regulatory measures dating back almost fifty years stresses the need for more independence and choice for people with disabilities, including I/DD.
  • Best practices stress that the Ownership of Property be distinct from the Provision of Services. In a situation where the provider of services is also the landlord, a person seeking to find a more suitable living environment may not be able to move from the house because they will lose their support services if they do; their landlord is their only provider.
  • The labor force that is prepared to do the hard work of a DSP at the pay offered is shrinking.
  • Funds available to the state from federal matching are unlikely to increase; in fact, they are more likely to decrease.
  • Most importantly, people who have I/DD and are looking for long-term housing do not want to live in segregated, routinized, and highly-regulated group homes.


An established and growing body of research demonstrates that smaller settings are most cost-effective, and that they provide the best option for people with I/DD. This knowledge surely compels all stakeholders to work diligently and urgently to ensure that settings are adapted to fit the needs of people with I/DD. Persisting with settings that are known to be less than appropriate is untenable. 

All of these factors are reflected in state policy that is increasingly focused on finding ways to make a finite budget go further, to ensure equity in use of resources and to access a wider range of housing and staffing options.

In the survey conducted as part of “What Happens When I’m Gone” 54% of respondents checked that they hoped that their family member would “age-in-place” in the certified setting they currently lived in. As people with I/DD now live close to a typical lifespan, issues associated with aging are increasingly pressing. However, there is limited preparation for support for people who need a higher level of support as they age. Most homes do not have fully accessible entrances, bathrooms, bedrooms, strengthened beams to accommodate Hoyer lifts or stair lifts. In practice people will move to a different location, perhaps one with increased medical care, or to a nursing home.

To learn more about Certified and Non-Certified housing visit the NYHRC website and view “Overview of Housing - Certified and Non-Certified which was originally shown as part of the “2019 Statewide Learning Institute”.  https://youtu.be/wdn9XYBzKHM


[1] Technically ICFs were created in 1972 but there were no regulatory guidelines until January 1974
[2] History of Nursing Homes and SNFs see Natl. Ctr. Biotech Info History of Federal Nursing Home Regulation, https://www.ncbi.nlm.nih.gov/books/NBK217552/ retrieved June 2018
[3] Braddock op.cit online NY State profile “Persons served by setting” retrieved May 2018
[4] Office for People With Developmental Disabilities. (2016). Report to the legislature: Residential  request list. https://nyhousingresourcecenter.starchapter.com/images/Report_to_the_Legislature_-_Residential_Request_List_0.pdf   retrieved June 2020
[5] For more information on Family Care see OPWDD site https://opwdd.ny.gov/providers/family-care-0 Retrieved May 2020
[6] Certified and Non-certified housing see the OPWDD website https://opwdd.ny.gov/providers/housing retrieved  April 2020
[7] Published by NYSACRA 2018 available at https://nyhousingresourcecenter.starchapter.com/images/downloads/nyaii_what_happens___intentional_report_10_04_18_final.pdf retrieved November 2018
[8] Parts 624 625, 633 available at https://govt.westlaw.com/nycrr/Browse/Home/NewYork/NewYorkCodesRulesandRegulations?guid=Icba70b30b7ec11dd9120824eac0ffcce&originationContext=documenttoc&transitionType=Default&contextData= Retrieved August 2020
[9] NY State Justice Center established in response to abuses within the OPWDD residential System in 2013 https://www.justicecenter.ny.gov/about/vision  retrieved September 2020
[10] DQI Site Review Protocol Resource October 3 2016 https://opwdd.ny.gov/system/files/documents/2019/11/site-review-protocol-digital-manual-impl-10.03.2016.pdf retrieved  July 2020
[11] OPWDD Person Support Services Plan. Office for People with Developmental Disabilities. 2016 ISS funding criteria/conditions. Albany, NY: Author.
[12] OPWDD Person Support Services Participation Agreement October 2010.
[13] OPWDD Person Support Services Quality Assurance Checklist October 2010.
[14] HCBS Settings rules https://www.govinfo.gov/content/pkg/FR-2014-01-16/pdf/2014-00487.pdf retrieved July 2020
[15] Long term research on the quality of life for people with I/DD conducted by the National Core Indicators project. See https://www.nationalcoreindicators.org/ retrieved July 2020
[16] HCBS settings rules are specific in many respects, but contrary to myth the final version does not specify any limits on the number of people who can live in a particular setting.
[17] OPWDD https://opwdd.ny.gov/providers/hcbs-settings-toolkit retrieved July 2020
[18] CMS Website https://www.medicaid.gov/medicaid/hcbs/downloads/q-and-a-hcb-settings.pdf retrieved July 2020
[19] Guidance to HHS Agencies for Implementing Principles of Section 2402(a) of the Affordable Care Act: Standards for Person-Centered Planning and Self-Direction in Home and Community-Based Services Programs. Secretary of Health & Human Services to Heads of Operating Divisions June 6 2014, https://acl.gov/sites/default/files/programs/2017-03/2402-a-Guidance.pdf retrieved July 2020.
[20] The CCS for 2020 is available at https://opwdd.ny.gov/system/files/documents/2020/03/2020-maximum-monthly-benefit-amounts.pdf retrieved July 2020
[21]  For changes in minimum wage see https://www.govdocs.com/new-york-state-15-minimum-wage-paid-family-leave/ Retrieved September 2020
[22] Lakin C. K., Doljanac R., Byun S., Stancliffe J. R., Taub S. & Chiri G. (2008). Factors associated with expenditures for Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facilities for Persons with Mental Retardation (ICF/MR) services for persons with intellectual and developmental disabilities. Intellectual and Developmental Disabilities 46(3), 200-214. Doi: 10.1352/2008.46:200–214
[23] re LTSS via HCBS. AARP meta analysis https://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/state-studies-find-hcbs-cost-effective-spotlight-AARP-ppi-ltc.pdf and Cost Efficiency in Medicaid LTSS, the role of HCBS published by NIH 2013 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710567/
[24] Braddock, D. et al (2017) op.cit.
[25] National Core Indicators op.cit.
[26] Hadfield, J. Prescription for living longer: Spend less time alone, BYU News March 2015 https://news.byu.edu/news/prescription-living-longer-spend-less-time-alone retrieved April 2020