A standard is not a wish. It is the document that decides what a school teaches, what an employer expects, and what counts as competent work. So it matters a great deal which ideas are written into it, and which ideas are only assumed. Nine nurse researchers went to find out. They read all 141 competencies in the national standards for intellectual and developmental disability nursing, and they checked each one against 14 ideas.1
The paper is open access under a Creative Commons licence, so you can read the whole thing at no cost. Download the full research report as a PDF (Nursing Outlook, volume 74, 2026, article 102796). This piece summarises it. It does not replace it.
01 · The study Nine nurses read 141 competencies and looked for 14 ideas.
About one child in six aged 3 to 17 in the United States has at least one developmental disability. In 2021, a total of 818,564 adults aged 21 to 41 had a diagnosis of intellectual disability.2 These people need nursing care for a whole lifetime. The standards that guide that care are therefore worth reading closely.
The American Nurses Association publishes those standards. The first edition came out in 1998. The current third edition came out in 2022.3 It sets out eight standards of practice. Each standard carries a list of competencies. A competency is one short statement of something the nurse does. There are 141 of them.
Where the 14 ideas come from
The 14 concepts are not new inventions. An earlier team drew them from federal law, from social policy, and from the self-advocacy movement, and asked nursing schools to teach them.4 Two of them, Inclusion and Integration, come straight out of the Developmental Disabilities Assistance and Bill of Rights Act. This study took that list and asked a simple question. Do the standards say these things, or do they only imply them?
How they did it
The method is called document analysis. Three nurses read every competency on their own. For each competency, each nurse marked every concept as present or absent. That is a yes or no mark, with no score for depth.
The team then compared the marks. Where the coders disagreed, they went back to the concept definitions and made them clearer. Then they coded everything a second time. They met online over three weeks to settle the differences. By the end there were no disagreements left. The remaining authors reviewed the results.
The study did not grade nursing. It graded a document. A yes mark means the words are on the page. A no mark means you must supply the idea yourself, from your own values. That difference is the whole point of the findings below.
| Standard | What the nurse does | Competencies |
|---|---|---|
| 1. Assessment | Collects full data about the person and the situation | 20 |
| 2. Diagnosis | Analyses that data to find diagnoses, problems and issues | 11 |
| 3. Outcomes Identification | Sets the expected results for that person | 13 |
| 4. Planning | Writes a plan with strategies and alternatives | 26 |
| 5. Implementation | Carries out the plan | 28 |
| 5A. Coordination of Care | Works with the person, the family, community resources and other systems | 19 |
| 5B. Health Teaching and Health Promotion | Promotes health, prevents secondary disability, keeps the setting safe | 13 |
| 6. Evaluation | Measures progress toward the goals and outcomes | 11 |
02 · The result Three ideas fill the standards. One is not in them at all.
Holistic Health appears in 110 of the 141 competencies. Advocacy appears in 108. Cultural Competence appears in zero. That is the headline, and the gap between the ends of the list is the story.
Use the buttons below to switch between the whole set of standards and any one standard. The bars sort again each time. You can then see how the same idea moves up or down from one part of the job to the next.
View as table
The top of the list is the part nursing already owns
Holistic Health means care for the whole person. It covers the body, the mind, the feelings, the social life and the spirit. It shows up in at least 69 percent of the competencies in every single standard. Advocacy means action to promote, protect and defend the rights of the person. It runs almost as high.
Lifespan sits third at 54 percent. It means that a person keeps developing across a whole life. Its distribution is the widest of any concept. It reaches 92 percent in Outcomes Identification and drops to 9 percent in Evaluation.
The bottom of the list is the part that is left to you
Cultural Competence is the only concept with a score of zero. It means care that respects and includes the beliefs, the norms and the life practices of the person and the family. Not one of the 141 competencies names it.
Integration is next lowest at 13 percent. It means the equal right of a person with a developmental disability to use the same community resources as everybody else. It does not appear in the Evaluation standard at all. So the standards ask the nurse to plan for community life, but they do not ask the nurse to check whether community life happened.
03 · The gap The standards ask the nurse to change. They rarely ask the system to change.
Look at the four concepts near the bottom of the list. Integration is 13 percent. Systemic Change is 28 percent. Accessibility is 27 percent. Capacity Building is 27 percent. Those four have one thing in common. None of them is something a nurse can do alone at the bedside. Each one needs a budget, a policy, a building or an employer.
The authors name this pattern directly. They describe a structural tendency to individualize responsibility while system accountability stays under-articulated. They borrow two terms for it from other fields. Organizational silence describes staff who stay quiet about problems the organization does not want raised. Structural silence describes the same effect built into the structure itself.5
That sentence is the load-bearing argument of the paper. The authors accept that Cultural Competence may live inside other concepts in spirit. Holistic Health, Advocacy, Inclusion, Equity and Self-Determination all require attention to a person's identity, values and communication needs. But a standard is a regulatory document, and a document can only carry what it names.
The authors also question the term itself
The paper does not simply ask for the words "cultural competence" to be added. It asks a better question. Are cultural humility and cultural safety more useful ideas for IDD nursing than cultural competence?6 Competence suggests a skill you finish learning. Humility and safety describe an ongoing habit and a result the person actually feels. For a nurse in a six-bed home, the second pair describes the real job better.
How this happened is not a mystery
Two of the paper's authors helped write the 2022 edition of the standards. They confirmed something useful. There was no transparent process that checked the new competencies against these 14 concepts. Nobody removed the ideas. Nobody put them in either. About half of the major benchmarks of the IDD movement are absent or underrepresented in the standards as a result.
The authors are careful, and you should be too. This study looked at text, not at practice. Absence in a standard does not prove absence in a nurse's values. Three of the coding team were close to the standards themselves, which is a strength and a risk at once. The study also covers United States standards only.
04 · Standard by standard Evaluation is the thinnest standard, and that is where plans fail.
Diagnosis and Evaluation both contain 11 competencies. Diagnosis produced 61 concept matches. Evaluation produced 41. The same amount of text carries much less of the field's thinking at the end of the cycle than at the start of it.
View as table
The next chart divides the total number of concept matches in a standard by the number of competencies in it. It gives one number: how many of the 14 ideas a typical competency in that standard carries. It is a computed figure, not one the paper prints, and it comes straight from the paper's own totals.
View as table
Why the thin end of the cycle should worry a small home
In a licensed home, the plan is only half of the work. The other half is proof that the plan did something. Advocacy and Holistic Health both hold above half in Evaluation. So the standards do ask you to check two things at the end. Were the person's rights upheld? Did the whole person improve? Almost nothing else survives to that stage.
Lifespan drops to 9 percent. Accessibility drops to 9 percent. Integration drops to zero. Your quarterly review should say whether a person got more access, more community life and more of a future. The standards will not prompt you to ask. You have to build that prompt yourself.
05 · The newer approach The newer approach puts the system inside the plan of care.
The 14 concepts describe a different job from the one the standards mostly describe. Set the two side by side and the change is easy to see.
The older approach
- The nurse treats the person and works around the barriers.
- Culture is handled by good intentions and personal courtesy.
- Community access is somebody else's department.
- A refused service is a fact of life to plan around.
- Success is a stable person and a clean record.
- The nurse carries the whole load, and works harder when the system fails.
The newer approach
- The nurse treats the person and records the barrier as a finding.
- Culture is asked about, written down, and checked again later.
- Community access is a health outcome the nurse measures.
- A refused service is data that goes back to the system that refused it.
- Success adds autonomy, access and a life the person chose.
- The nurse names what the system must change, and says so in writing.
The authors give this shape a name. The 14 concepts group into domains that match a well-known model of human development.7 In that model, a person sits inside a family, inside a community, inside a system. The authors call the result the IDD Nursing Model of Care. The practical meaning is short. A concept that only ever lands on the person is a concept the system has been excused from.
Their recommendation for the next edition is equally short. Every standard should carry at least one competency at the system level. That single change would move Systemic Change, Capacity Building, Accessibility and Integration off the floor of the chart.
06 · What to do Six things a nurse in a six-bed home can do this month.
You cannot rewrite a national standard. You can close the same gaps inside your own home, and every item below costs time rather than money.
- Ask each person about culture, and write the answer in the record. Record food, language, faith, holidays, family roles and touch. The standards will not prompt you, so make your own form do it.
- Add one access question to every teaching moment. Ask whether the person can read the material, hear the instruction and reach the equipment. Accessibility is strongest in the health teaching standard, so use it there first.
- Put one community goal in each plan, and measure it. Integration scored 13 percent in the standards and zero in Evaluation. Count trips, visits and ordinary places used, the same way you count weights.
- Record a refusal as a finding, not as a delay. When a clinic, a plan or a vendor turns your resident away, write the date, the reason and the effect on health. That record is the system-level evidence the standards do not ask for.
- Make the quarterly review answer six questions, not two. Add access, autonomy, integration and self-determination to the health and safety questions you already answer.
- Name the concept in your in-service training. Use the same 14 words with your staff every time. A shared word is what turns a value into something you can teach and check.
07 · Questions What nurses ask about this research.
What are the IDD nursing standards?
The IDD nursing standards are the national standards of practice for nurses who care for people with intellectual and developmental disabilities. The American Nurses Association publishes them. The first edition came out in 1998. The current third edition came out in 2022. It contains eight standards of practice and 141 competencies. The standards shape nursing education, licensure content, job descriptions and what an employer counts as competent work.
What did the 2026 study of the IDD nursing standards find?
The study measured 14 IDD concepts against all 141 competencies. Holistic Health appeared in 78 percent of the competencies. Advocacy appeared in 77 percent. Lifespan appeared in 54 percent. At the other end, Integration appeared in 13 percent, and Cultural Competence appeared in none of the 141 competencies. Accessibility and Capacity Building each appeared in 27 percent, and Systemic Change appeared in 28 percent.
Why does it matter that Cultural Competence was not found?
The authors accept that the idea may be present in spirit inside other concepts such as Holistic Health and Advocacy. Their concern is what a standard can carry. A standard is a regulatory document. An idea that is not named in it cannot be taught from it, measured against it, or enforced through it. The authors also ask whether cultural humility and cultural safety fit IDD nursing better than cultural competence does.
Do the IDD nursing standards apply to a nurse in an ICF/DD-N home?
The standards are professional standards, not a licensing rule for a facility. The American Nurses Association wrote them for nurses in every setting that serves people with intellectual and developmental disabilities. A small intermediate care facility is one of those settings. They do not replace the requirements that CDPH and the regional center place on your home. Treat them as the description of good practice that your profession has agreed on, and treat your licence conditions as separate.
What is the difference between the older approach and the newer approach in IDD nursing?
The older approach puts the whole task on the nurse. The nurse assesses the person, plans around the barriers, and works harder when the system does not help. The newer approach keeps all of that and adds one more duty. The nurse also records what the system did wrong and asks for the system to change. The study calls the older pattern a tendency to individualize responsibility while system accountability stays unstated.
Turn the standard into something your staff can follow.
DirectCare helps small California homes write program plans, training plans and review forms that a surveyor can follow and a caregiver can use. Start with a free consultation.
Notes and sources
- Graff, J. C., Oh, E., Etheridge, S., Fisher, M., Hill, L., Kent, K., LaMothe, J., Nelson, S., Placide Reaves, R., and Betz, C. Nursing standards of practice and persons with intellectual and developmental disabilities: Concepts and competencies. Nursing Outlook, 74 (2026), 102796. Open access under CC BY-NC-ND. All counts, percentages and quoted phrases in this article come from that paper. doi.org · download the PDF ↩
- Prevalence figures as cited in the study: Centers for Disease Control and Prevention on developmental disability, with Zablotsky and others, Pediatrics, 2019; and Benevides, T. W., and others, Prevalence of intellectual disability among adults born in the 1980s and 1990s in the United States, Journal of Intellectual Disability Research, 68(4), 2024. doi.org ↩
- American Nurses Association. Intellectual and Developmental Disabilities Nursing: Scope and Standards of Practice, third edition, 2022. The competencies analysed appear on pages 72 to 91. nursingworld.org ↩
- Fisher, M. J., Graff, J. C., Hill, C., LaMothe, J., Nelson, S. R., Kent, K. A., and Betz, C. L. Innovating nursing education through partnership with individuals with intellectual and developmental disabilities. Journal of Nursing Education, 64(2), 2025, pages 75 to 80. This is the paper that defined the 14 concepts. doi.org ↩
- Henriksen, K., and Dayton, E. Organizational silence and hidden threats to patient safety. Health Services Research, 41(4 Pt 2), 2006; and Guo, C., and Yang, Y. Present but useless: why power and culture create structural silence in the cockpit. Journal of Cultural Analysis and Social Change, 11(1), 2026. Both are cited by the study. doi.org ↩
- Lekas, H. M., Pahl, K., and Fuller Lewis, C. Rethinking cultural competence: shifting to cultural humility. Health Services Insights, 13, 2020; and Curtis, E., and others. Why cultural safety rather than cultural competency is required to achieve health equity. International Journal for Equity in Health, 18(174), 2019. doi.org ↩
- Bronfenbrenner, U., and Ceci, S. Nature-nurture reconceptualized in developmental perspective: a bioecological model. Psychological Review, 101(4), 1994. The study uses this model to group the concepts into the person, family, nurse, community and health system domains. doi.org ↩
Every count and percentage on this page is published in the study named in note 1, in its Tables 3a, 3b and 3c. The one exception is the concept matches per competency chart, which is computed from the study's own row totals and is labelled as computed. The six steps in section 06 are DirectCare guidance, not findings of the study.