A person who worked in this field in 1977 and walked into a modern six-bed home would recognise almost nothing. Not the size, not the vocabulary, not the paperwork, and not who gets to decide what happens at dinner. The change was not a style choice. It came from law, litigation, advocacy and money, and it landed hardest on the smallest providers, because they are where most of the care now happens.
01 · The shift From 8 percent to 84 percent in forty-four years.
The Residential Information Systems Project at the University of Minnesota has tracked where people with intellectual and developmental disabilities live since the 1970s. Its central finding is a single line: the proportion who shared a home with six or fewer service recipients rose from 8 percent in 1977 to 84 percent in 2021.1
View as table
| Year | People served outside a family home | Share in settings of 6 or fewer |
|---|---|---|
| 1977 | 247,780 | 8% |
| 1997 | 342,244 | not stated |
| 2017 | 516,505 | not stated |
| 2021 | 542,069 | 84% |
The intermediate care facility population moved the other way. It stood at 140,752 people in 1982 and 63,085 in 2021, a rate of about 19 per 100,000 of the United States population. That decline is uneven across states. Four states had no ICF/IID residents at all in FY 2021, while Louisiana reported 87 per 100,000. California sits in the band of 11 to 20 per 100,000.1
California closed the large institutions
The state moved decisively. Agnews Developmental Center closed in March 2009. Sierra Vista followed in early 2010. Lanterman's last resident moved into the community on December 23, 2014. Sonoma closed at the end of December 2018. The general treatment area at Porterville closed in December 2019, and in February 2020 everybody at Fairview moved into community settings. DDS now operates one developmental center, the secure treatment program at Porterville, plus one community facility and six acute crisis homes.2
You are not a leftover from an older system. You are the setting the system chose. That is the good news and the pressure at the same time, because everything the field expects of care now has to be delivered inside a house, by a small team, without an institution's back office.
02 · The narrative Nothing about the person, without the person.
The story the field tells about disability has moved from protection to authorship. Three concrete changes matter for daily practice.
Language: ask, do not assume
The federally funded Employer Assistance and Resource Network on Disability Inclusion states that person-first and identity-first language are "equally appropriate depending on personal preference," and that when in doubt you ask the person which they prefer. It adds that a person should not be corrected if they choose not to use person-first language.3 Many younger people choose identity-first language. The rule of thumb is simple: use the words the person uses about themselves, and record the preference so new staff do not have to guess.
Decision-making: supports before substitution
California added a whole division to its welfare code in 2022, and the statute now defines4 supported decisionmaking as "an individualized process of supporting and accommodating an adult with a disability to enable them to make life decisions without impeding the self-determination" of that adult. The same bill amended the Probate Code so a court must consider a person's abilities "with current and possible supports, including, but not limited to, supported decisionmaking agreements," and so petitions must state which alternatives to conservatorship were considered and why they are not suitable.
The joint position of the leading professional association and The Arc, adopted in 2021, sets the frame:5 every adult is legally presumed competent to make decisions, less restrictive supports should be tried first, and any restriction on autonomy must be the least restrictive alternative available.
Self-determination as a funded program
California's Self-Determination Program was created by legislation in 2013 and now sits in statute.6 It ran under a 2,500-person cap during its first phase, and opened to every eligible regional center recipient on July 1, 2021. Statewide enrollment reached 8,169 people as of October 31, 2025. Against a caseload approaching half a million, that is still small. The direction is unambiguous.
03 · The room Federal rules now reach into the kitchen.
The federal home and community-based services settings rule is the most concrete change of the last decade.7 For provider-owned or controlled residential settings it requires, among other things:
- A legally enforceable agreement giving the person the same protections from eviction that tenants have under landlord and tenant law, or comparable written protections.
- Entrance doors "lockable by the individual, with only appropriate staff having keys."
- Choice of roommate for people sharing a unit.
- Freedom to furnish and decorate their own sleeping or living unit.
- Freedom and support to control their own schedules and activities, and "access to food at any time."
- Visitors of their choosing at any time.
- A setting that is physically accessible to the person.
Any modification of those conditions must be supported by a specific assessed need and justified in the person-centered service plan. The rule then lists what the justification must contain: the individualized assessed need, the positive interventions tried first, the less intrusive methods that did not work, a description of the condition proportionate to the need, regular data on effectiveness, time limits for review, informed consent, and an assurance of no harm.
The transition period ended on March 17, 2023. The federal government granted final approval of California's statewide transition plan on June 30, 2023.8 The work has moved from transition to permanent monitoring, which means these are now normal survey subjects rather than a project with an end date.
A locked kitchen, a fixed dinner hour, and a blanket visiting policy are the three most common findings. Each of them used to be ordinary practice. Each of them now needs either removal, or a per-person justification with data behind it.
What good design guidance actually says
The published design work is worth knowing, with one caveat stated up front. We found no peer-reviewed study proving a causal link between specific design features and measured outcomes for people with IDD in small United States settings. These are expert frameworks, not trial results.
- Universal design, the 1997 principles from North Carolina State University9: equitable use, flexibility in use, simple and intuitive use, perceptible information, tolerance for error, low physical effort, and adequate size and space for approach and use.
- Full Spectrum Housing, Arizona State University, 20099: ten goals including "minimize sensory overload," control over social interaction and privacy, and a home that blends with neighbouring residences to reduce stigma.
- The ASPECTSS index, 2018: acoustics, spatial sequencing, escape spaces, compartmentalization, transition zones, sensory zoning and safety.
Notice how well the third Full Spectrum goal and the settings rule agree. A home that looks like a house on a street, and not like a small institution, serves the design principle and the federal integration requirement at the same time.
04 · The money The institution shrank. Its cost per person doubled.
This is the most misunderstood part of the story, and the numbers are unusually clear.
The adult-to-adult comparison is the honest one.10 The overall waiver average is pulled down by children who receive limited services while living with family. Even so, community services cost well under half as much per adult.
The trend line matters more than the snapshot. Between 1982 and 2020 the number of people living in ICFs/IID fell from 140,752 to 64,902, while the average cost rose from $64,304 to $145,306 per person per year, in constant 2020 dollars. Shrinking institutions do not get cheaper per resident. Fixed costs stay, and the people who remain have the highest needs.
A second national project, using FY 2023 data, reports $104.6 billion in public spending11 on services for people with intellectual and developmental disabilities, with Medicaid supplying 83.1 percent. Of the 729,109 people receiving services, 87 percent lived in community settings of six or fewer people, and 62.2 percent of national spending supported settings of that size. Those figures use a different denominator and year from the RISP numbers above, so read them as corroboration of direction, not as the same statistic.
05 · The technology Real, useful, and smaller than the marketing.
Three separate things get bundled together under "technology in care." They sit at very different stages, and only one of them is likely to change your week.
Electronic visit verification
Electronic visit verification comes from federal legislation passed in 2016. It applies to personal care services and home health care services, with federal deadlines12 of January 1, 2020 and January 1, 2023. California made its system available to personal care providers on January 1, 2022 and home health providers on January 1, 2023, and required regional center providers to transmit compliant data by June 1, 2023. Six data elements are required, including the location of service delivery and the start and end times.
California then tied it to money. Providers of personal care and home health services had until February 27, 2026 to complete EVV self-registration or be verified as exempt. Those who did not lost Quality Incentive Program eligibility from July 1, 2026.12 Your ICF/DD bed rate is not paid through that system, but the vendored services around your residents often are.
Records
Small residential providers are the least digitised part of long-term care, and the reason is structural. Federal data put electronic health record adoption in residential care communities at 26 percent in 2016, rising to 50 percent for facilities with 100 or more beds, against 84 percent in skilled nursing in 2018.13 Providers serving people with intellectual and developmental disabilities were not eligible for the federal incentive payments that drove adoption elsewhere. There is no published adoption figure for IDD providers at all.
Assistive technology
A 2024 systematic review of 18 studies across 13 countries found benefits for social participation and independence in daily activities from virtual reality, mobile applications and interactive software.14 The samples were small, between 3 and 52 participants, and the age range topped out at 26.
Buy technology because it removes a burden you can name, on a specific day, for a specific person. The published evidence in this field is thin, the samples are small, and nothing yet shows that a purchase here reliably saves money. A system that gives a caregiver twenty minutes back every shift needs no research to justify it.
06 · What this asks of you Four things a six-bed home can do now.
- Record each person's language preference. Put it where new staff will read it on day one, next to how they communicate and what a good day looks like for them.
- Audit the house rules against the settings rule. Kitchen access, visiting hours, bedroom locks, roommate choice, decoration. Anything you restrict needs a per-person justification with the eight required elements, or it needs to stop.
- Learn what supported decisionmaking looks like in practice. California has it in statute. Families will ask. Being the provider who can explain it is a real advantage.
- Digitise the records that cost you shift hours. Policies, training files, data collection. You will not get a federal incentive for it, so choose the two systems that give the most hours back and leave the rest alone.
07 · Questions What people ask about where this is going.
Is the ICF/DD model going away?
The national ICF/IID population has fallen by more than half since 1982 and continues to decline, unevenly by state. That is a fact, and it is worth planning around. It is not the same as disappearance. The people served in a four-to-six bed ICF/DD-N are medically fragile and need skilled nursing on a recurring basis, and the small licensed setting remains the answer for them. What has ended is the large facility, not the small one.
Does the settings rule apply to my ICF/DD home?
The settings rule governs settings where Medicaid home and community-based services are delivered. An intermediate care facility is an institutional benefit rather than an HCBS setting, so the rule does not apply to it in the same way. Ask your regional center and CDPH how it applies to your particular arrangement, especially if any resident receives waiver-funded services. Regardless of the technical answer, the expectations behind the rule now shape what families, advocates and surveyors consider ordinary good practice.
Person-first or identity-first language in our documents?
For a specific person, use what that person prefers, and record it. For general policy documents, person-first language remains the safe default in regulatory and clinical writing. Note that the federal regulations themselves use the word "client," so your program documents will contain that term whatever house style you adopt.
Is community care actually cheaper, or is that advocacy?
The published figures support it clearly. In FY 2021 the average Medicaid cost per adult was $144,609 in an ICF/IID and $62,998 on an HCBS waiver. The more interesting number is the trend: institutional cost per person more than doubled in real terms between 1982 and 2020 while the census halved. Fixed costs do not shrink with the population.
Modern operations, without losing what makes the home good.
DirectCare helps small California homes move paper systems into digital ones, keep records survey ready, and use technology where it earns its place. Start with a free consultation.
Notes and sources
- Residential Information Systems Project, Institute on Community Integration, University of Minnesota: people with IDD in non-family settings by setting size from 1977 to 2021, and the intermediate care facility population and rate per 100,000 by state. ici.umn.edu ↩
- California Department of Developmental Services on developmental center closures and on the state-operated facilities that remain. dds.ca.gov ↩
- Employer Assistance and Resource Network on Disability Inclusion, funded by the US Department of Labor, on people-first and identity-first language. askearn.org ↩
- California Welfare and Institutions Code division 11.5, added by Assembly Bill 1663 in 2022, which defines supported decisionmaking and amended the Probate Code so courts must consider a person's abilities with current and possible supports before ordering a conservatorship. justia.com ↩
- Joint position statement of the American Association on Intellectual and Developmental Disabilities and The Arc on autonomy, decision-making supports and guardianship, July 2021. aaidd.org ↩
- California's Self-Determination Program, created by Senate Bill 468 in 2013 and codified at Welfare and Institutions Code section 4685.8. Statewide enrolment reached 8,169 as of October 31, 2025, reported in the department's presentation to the statewide advisory committee. dds.ca.gov ↩
- The home and community-based settings requirements at 42 CFR 441.301(c)(4), including the conditions for provider-owned residential settings and the evidence a modification must carry. eCFR ↩
- Centers for Medicare and Medicaid Services on settings rule compliance after the transition period ended on March 17, 2023, and the federal approval of California's statewide transition plan on June 30, 2023. PDF ↩
- The Principles of Universal Design, North Carolina State University, 1997; and Ahrentzen and Steele, Advancing Full Spectrum Housing: Designing for Adults with Autism Spectrum Disorders, Arizona State University, 2009. The ASPECTSS design index was published in Archnet-IJAR in 2018. PDF ↩
- Residential Information Systems Project: Medicaid expenditure per person for institutional and waiver-funded services in FY 2021, by age, and the long-run comparison between 1982 and 2020 in constant dollars. ici.umn.edu ↩
- State of the States in Intellectual and Developmental Disabilities, University of Kansas, 2025 update using fiscal year 2023 data. Different denominators and years from the figures above, so read it as corroboration of direction rather than the same statistic. stateofthestates.ku.edu ↩
- Electronic visit verification requirements under section 12006(a) of the 21st Century Cures Act, the federal deadlines, California's implementation dates and required data elements, and the February 2026 registration deadline tied to Quality Incentive Program eligibility. dds.ca.gov ↩
- Office of the Assistant Secretary for Planning and Evaluation, Health Information Technology Adoption and Utilization in Long-Term and Post-Acute Care Settings, December 2023. The report contains no data for providers serving people with IDD. ncbi.nlm.nih.gov ↩
- Klavina and others, The use of assistive technology to promote practical skills in persons with autism spectrum disorder and intellectual disabilities: a systematic review, Digital Health, 2024. journals.sagepub.com ↩
Where this article gives a number, the source beside it published that number. Where the evidence is thin, the article says so instead of filling the gap. National and California figures are labelled separately throughout.