Quality-of-Life Outcomes of Older Adults with Severe Disabilities

Abstract

People with disabilities who age may have unique experiences and face different challenges than people without disabilities who acquire disabilities as they age. These unique challenges may be especially pertinent for people with severe disabilities who already face disparities in quality of life. Yet, there is little research specifically about the quality of life of older adults with severe disabilities, a population that has continued to grow due to advances in medicine and social supports. This study’s aim was to explore quality-of-life outcomes of older adults with severe disabilities. We analyzed Personal Outcome Measures® data from 800 people with severe disabilities aged 55 years old and older. Findings revealed most older adults with severe disabilities had less than half of the quality-of-life outcomes present. Specifically, we found that while most older adults with severe disabilities were healthy, safe, and free from abuse and neglect, the overwhelming majority were lacking in community integration, relationships, choice, and opportunities. Our findings suggest the lack of quality-of-life outcomes among older adults with severe disabilities were largely attributed to an absence of supports. When older adults with severe disabilities received individualized organizational supports, they had better quality of life.

Keywords

severe disabilities older adults quality of life services and supports

The lifespan of people with disabilities has increased significantly over time due to large societal changes, such as deinstitutionalization; an influx of rights, opportunities, and inclusion; and improvements in medical care (Lauer & McCallion, 2015; McCallion, McCarron, Fahey-McCarthy, & Connaire, 2012; O’Leary, Cooper, & Hughes-McCormack, 2017; Roebroeck, Jahnsen, Carona, Kent, & Chamberlain, 2009; Thomas & Barnes, 2010; Thornicroft, 2011). Longer life expectancy means people with disabilities are more likely to be exposed to age-related diseases and other conditions that can make their lives more challenging or require adjustment (Coyle, Kramer, & Mutchler, 2014; McCallion et al., 2012). Moreover, there may be “interactions of aging and lifelong disability” (Davidson, Heller, Janicki, & Hyer, 2004, p. 2), wherein although aging people with disabilities may have some similar experiences with people who age into disability, they likely also have different experiences (Coyle et al., 2014). For example, the quality of life of older adults with physical disabilities is affected not only by social dimensions, such as relationships and social roles, but also by the control they have over their lives (Levasseur, Desrosiers, & Noreau, 2004a, 2004b; Levasseur, Desrosiers, & Tribble, 2008; Levasseur, Tribble, & Desrosiers, 2009). Older adults with physical disabilities that have relationships, social roles, and control over their lives reported having higher quality of life than those older adults with physical disabilities without these things.

Despite advances in life expectancies, many people with disabilities still have significantly lower life expectancies than people without disabilities (Lauer & McCallion, 2015; O’Leary et al., 2017; Roebroeck et al., 2009; Thomas & Barnes, 2010; Thornicroft, 2011). For example, people with intellectual and developmental disabilities (IDDs) have life expectancies that are 20 years less than people without disabilities (Lauer & McCallion, 2015; O’Leary et al., 2017). Lower life expectancy rates have been linked with higher impairment severity, support needs, and frailty (Bilotta et al., 2010; Lauer & McCallion, 2015; O’Leary et al., 2017).

In addition to higher mortality rates, research has also suggested that people with severe disabilities in general face quality-of-life disparities compared with people with less severe disabilities (Evenhuis, Henderson, Beange, Lennox, & Chicoine, 2001; McIntyre, Kraemer, Blacher, & Simmerman, 2004; Vos, De Cock, Petry, Van Den Noortgate, & Maes, 2010). Although to our knowledge there is no research specifically about the quality of life of older adults with severe disabilities, there is some research about the quality of life of people with severe disabilities more broadly. Proxy research conducted with mothers of young adults with severe disabilities (18-24 years) found that mothers reported activities, hobbies, recreation, basic needs, and social roles as important parts of their adult child’s quality of life (McIntyre et al., 2004). The mothers also reported work, communication, health, and consistency as less important to their adult child’s quality of life (McIntyre et al., 2004). Vos et al. (2010) conducted proxy research with direct support professionals about the subjective well-being (mood, interest, and pleasure) of people with severe and profound disabilities (not older adults in particular). In doing so, they found that direct support professionals rated the subjective well-being of people with profound disabilities as lower than people with mild, moderate, or severe disabilities. While they looked at the correlations between age (across disability severity) and subjective well-being, the findings were not significant.

Moreover, as quality of life is person-centered, people with more severe disabilities may have different priorities when it comes to quality of life than people with less severe disabilities (McIntyre et al., 2004). For example, independence may be less important to some people with disabilities—especially people with severe disabilities—that favor the concept of interdependence; as a result, having less independence may not negatively impact their view of their quality of life. These different perceptions of quality of life may be particularly true as people with severe disabilities age; however, there is little to no research specifically about the quality of life of older adults with severe disabilities, a population that not only faces unique experiences and needs, and quality-of-life disparities, but also will continue to grow in number in future years (Evenhuis et al., 2001; McCallion et al., 2012; McIntyre et al., 2004; Vos et al., 2010).

In this study, we explored the quality-of-life outcomes of older adults with severe disabilities. We analyzed Personal Outcome Measures® data from 800 people with severe disabilities, aged 55 years old and older. We also examined the impact organizational supports can have on personal outcomes. Finally, we explored disparities in outcomes and supports among older adults with severe disabilities. In doing so our research questions were as follows:

Research Question 1: What is the overall quality of life of older adults with severe disabilities?

Research Question 2: What is the relation between personal outcomes and organizational supports?

Research Question 3: What disparities exist in personal outcomes and organizational supports among older adults with severe disabilities?

Method

Measures of Quality of Life and Support

This study was based on secondary analyses of data gathered using the Personal Outcome Measures®, developed by The Council on Quality and Leadership (2017a). The Personal Outcome Measures® was developed over 25 years ago based on findings from focus groups with people with disabilities, their family members, and other key stakeholders (e.g., professionals, researchers, allies) about what really mattered in their lives. The tool has been continuously refined over the past two decades through pilot testing, commission of research and content experts, a Delphi survey, feedback from advisory groups, and over 25 years of administration (The Council on Quality and Leadership, 2017a). The Personal Outcome Measures® has established construct validity utilizing a principal component analysis (Friedman, 2018b).

The Personal Outcome Measures® tool is designed to determine people with disabilities, quality of life in a person-centered manner, including self-determination, choice, self-advocacy, and supports. The Personal Outcome Measures® includes 21 indicators divided into five factors (domains): (a) my human security, (b) my community, (c) my relationships, (d) my choices, and (e) my goals. My human security includes the following indicators: people are safe; people are free from abuse and neglect; people have the best possible health; people experience continuity and security; people exercise rights; people are treated fairly; and people are respected. My community includes the following indicators: people use their environments; people live in integrated environments; people interact with other members of the community; and people participate in the life of the community. My relationships includes the following indicators: people are connected to natural support networks; people have friends; people have intimate relationships; people decide when to share personal information; and people perform different social roles. My choices includes the following indicators: people choose where and with whom to live; people choose where to work (includes what they do during the day and retirement); and people choose their services. My goals includes the following indicators: people choose personal goals and people realize personal goals.

For every participant, the Personal Outcome Measures® administration occurs in three stages. In the first stage, a trained Personal Outcome Measures® interviewer has in-depth conversations with the participant with disabilities about each of the indicators. For these conversations, the interviewer follows specific open-ended prompts. If the person being interviewed has significant impairments and/or does not communicate with words, a series of techniques are utilized to enhance communication, including augmentative alternative communication, observation, visual cues, photos, gestures, preference testing, and/or objects (Overpeck, 2019). In addition, if necessary and/or wanted by the person being interviewed, a friend, family member, or staff member can support the person with disabilities to participate in the interview. During the second stage of the Personal Outcome Measures® interview, the interviewer speaks with someone who knows the participant with disabilities best and knows about organizational supports. This participant is selected by the person with disabilities or the organization; the participant may be a case manager or direct support professional. The participant is asked questions about individualized supports and outcomes to fill in any gaps in knowledge from the first stage. During the final stage, if further information is required, the interviewer observes the participant in various settings and conducts individual record reviews. The interviewer then completes decision trees about personal outcomes and individualized organizational supports based on the information gathered in the three stages (for more information about decision trees for each indicator, see The Council on Quality and Leadership, 2017a). Utilizing these decision trees, the interviewer decides if each of the 21 personal outcomes are present (1) or not (0), as well as if each of the 21 individual organizational supports are in place (1) or not (0).

For example, in regard to the indicator “people have friends,” examples of questions the interviewer may use to guide their conversation with the person with disabilities include: “How do you define friendship? With whom do you like to spend time? What do you like to do with friends? Do you spend enough time with them? Besides seeing your friends, what other kinds of things do you do to stay in contact?” (The Council on Quality and Leadership, 2017a, p. 56). Utilizing all of the data gathered, the interviewer would first complete the decision tree for the outcome for “people have friends”: “Does the person have friends? Is the person satisfied with the number of friends they have? and Is the person satisfied with the amount of contact with their friends?” (The Council on Quality and Leadership, 2017a, p. 57). The answers to all of these questions must be “yes” for the outcome to be considered present. Examples of questions that may be used to guide the second interview regarding organizational supports include: “How do you know if the person needs support to develop or maintain friendships? How do you assist the person to overcome barriers to this outcome? and What organizational practices, values, and activities support this outcome for the person?” (The Council on Quality and Leadership, 2017a, p. 56). To determine if organizational support is considered in place, the interviewer completes the following decision tree: “Does the organization know the person’s preference and need for friends? and Are supports provided to assist the person with developing, maintaining, and enhancing friendships, if needed?” (The Council on Quality and Leadership, 2017a, p. 57). The answer to both of these questions must be “yes” for the organizational support to be considered in place for people are friends.

Reliability

This study included only interviews conducted by certified interviewers. In addition to attending an intensive week-long training, to become certified, people must participate in practice interviews, observation, and coaching. Certified interviewers are also required to pass interrater reliability tests with an expert interviewer. During this test, they complete a Personal Outcome Measures® interview and their findings must be in compliance with the expert interviewer with at least 85% consistency (The Council on Quality and Leadership, 2017b). They are also required to participate in at least 10 hr of continuing education and a minimum of 20 interviews in their 2-year certification term to maintain their certification. The Council on Quality and Leadership certifies hundreds of people across the United States each year; the data in this data set come from approximately 190 interviewers.

Participants

The secondary survey data were transferred to the researchers without individual or organizational identifiers. The participants in this study were persons for whom Personal Outcome Measures® were collected over a 4-year period (January 2015 to Spring 2019).

The data set included 4,088 people with disabilities, 30.11% (n = 1,231) were 55 years old or older (Neugarten, 1974). People 54 years old or younger, or those who did not have data about age, were removed from the sample. Daily support needs were used as a proxy for severity of the impairment. Daily support needs were defined as the average number of hours the person needed support and/or received support services per day; presumably those with the most support—around the clock (24/7)—had more severe disabilities. Of the 1,231 older adults, 64.99% (n = 800) had around the clock supports. Those people without around the clock supports, or those without information about daily support needs, were removed from the sample. As a result, the total sample size was 800 older adults with more severe disabilities.

The 800 participants ranged in age from 55 to 97; the mean age of participants was 65.50 (SD = 7.97). The majority of participants were White (81.96%, n = 636). The most prevalent primary method of communication was verbal/spoken language (73.84%, n = 587). Also, most participants lived in provider-owned or provider-operated homes (74.97%, n = 596) (see Table 1).

Table 1.

Participant Demographics (N = 800).

Variable	n	%	M	SD
Age in years			65.51	7.97
Disabilities (n = 786)
Intellectual/developmental disability	709	90.20
Seizure disorder/neurological problems	169	21.50
Mood disorder	145	18.45
Anxiety disorders	132	16.79
Behavioral challenges	128	16.28
Other mental illness/psychiatric diagnosis	94	11.96
Personality/psychotic disorder	80	10.18
Physical disability	75	9.54
Impulse-control disorder	72	9.16
Limited or no vision—legally blind	51	6.49
Hearing loss—severe or profound	40	5.09
Brain injury	17	2.16
Other disabilities not listed	75	9.54
Gender (n = 794)
Man	401	50.50
Woman	393	49.50
Guardianship status (n = 785)
Independent decision-making	169	21.53
Assisted decision-making	304	38.73
Full/plenary guardianship	280	35.67
Other	32	4.08
Primary method of communication (n = 795)
Verbal/spoken language	587	73.84
Face/body expression	171	21.51
Sign language	9	1.13
Communication device	6	0.75
Other	22	2.77
Race (n = 776)
White	636	81.96
Black	99	12.76
Latinx	18	2.32
Indigenous American	16	2.06
Asian	5	0.64
Native Hawaiian or Other Pacific Islander	1	0.13
Other	3	0.39
Residence type (n = 795)
Provider-owned or provider-operated home	596	74.97
Own home/apartment	107	13.46
ICFDD (state or private)	40	5.03
Host family/family foster care	18	2.26
State-operated HCBS group home	18	2.26
Nursing home or assisted living facility	4	0.50
Family’s house	3	0.38
Other	9	1.13

Note. Participants could have more than one disability or race. ICFDD = intermediate care facility for people with developmental disabilities; HCBS = home and community-based services.

Data Analysis

Quality-of-life outcomes

To explore quality-of-life outcomes, we utilized descriptive statistics. We aggregated each of the 21 personal outcomes to explore participants’ total personal outcomes. We also aggregated each of the 21 individualized organizational supports to explore participants’ total organizational supports. In addition, we used descriptive statistics to examine trends in outcomes and supports across participants in each of the 21 indicator areas.

The relation between personal outcomes and organizational supports

As we were interested in examining the impact of organizational supports on personal outcomes, we explored this relation both for total outcomes (aggregate) and each of the 21 outcome indicators. We utilized a Pearson correlation to explore the relation between total organizational supports and total outcomes. We also ran a series of binary logistic regression models to explore the relation between each of the 21 supports (independent variables [IVs]) and each of the 21 outcomes (dependent variables [DVs]). For example, we explored how receiving individualized organizational supports to have friends (IV) increased or decreased the odds of older adults with severe disabilities having friends (outcomes present; DV). Given the lack of literature regarding quality of life of older adults with severe disabilities, this research is exploratory. As such, there were no specific hypotheses; rather, we were interested in testing all of the supports individually to explore their impact on different areas of quality of life. Bonferroni correction (0.0024) was used to counteract running multiple models.

Disparities in outcomes and supports

To explore disparities in personal outcomes and organizational supports among older adults with severe disabilities, we utilized multiple linear regression models. To do so, the total personal outcomes present and the total organizational supports in place were utilized as the DVs for each model. We used all of the demographic variables (i.e., age, gender, disability type, race, primary method of communication, guardianship status, and residence type) as the IVs to determine disparities in personal outcomes and organizational supports across particular groups of older adults with severe disabilities.

Results

Quality-of-Life Outcomes and Organizational Supports

The participants had an average of 10.22 (SD = 5.05) outcomes present (out of the possible 21; 48.7%). Although total outcome scores ranged from 0 to 21, 14.65% of participants scored between 0 and 4, 31.36% between 5 and 9, 33.29% between 10 and 14, 16.45% between 15 and 19, and 4.24% between 20 and 21. We also explored each of the 21 indicators individually for both outcomes and supports (see Table 2). The top three outcomes were as follows: people are safe (84.73%); people have the best possible health (69.59%); and people use their environments (68.25%). The bottom three outcomes were as follows: people choose where and with whom to live (16.54%); people choose services (28.82%); and people choose where to work (33.33%).

Table 2.

Outcomes Present and Supports in Place by Indicator.

Indicator	% outcomes present	% supports in place
People are safe	84.73	85.73
People are free from abuse and neglect	62.36	68.80
People have the best possible health	69.59	70.71
People experience continuity and security	49.31	64.29
People exercise rights	48.56	50.87
People are treated fairly	57.70	56.52
People are respected	57.14	60.58
People use their environments	68.25	69.89
People live in integrated environments	33.58	35.26
People interact with other members of the community	59.97	60.83
People participate in the life of the community	45.38	55.90
People are connected to natural supports	39.05	62.78
People have friends	41.85	48.19
People have intimate relationships	38.39	40.85
People decide when to share personal information	52.95	55.40
People perform different social roles	35.47	34.59
People choose where and with whom to live	16.54	20.10
People choose where to work	33.33	34.88
People choose services	28.82	29.07
People choose personal goals	44.67	45.97
People realize personal goals	53.01	48.74

Participants had an average of 11.00 (SD = 5.58) organizational supports in place (out of the possible 21, 52.4%). Although total organizational support scores ranged from 0 to 21, 14.14% of participants scored between 0 and 4, 24.04% between 5 and 9, 33.80% between 10 and 14, 18.89% between 15 and 19, and 7.97% between 20 and 21. The top three organizational supports were as follows: people are safe (85.73%); people have the best possible health (70.71%); and people use their environments (69.89%; see Table 2). The bottom three organizational supports were as follows: people choose where and with whom to live (20.10%); people choose services (29.07%); and people perform different social roles (34.59%).

The Relation Between Personal Outcomes and Organizational Supports

A Pearson correlation was computed to assess the relation between total organizational supports and total quality-of-life outcomes; the model was significant, r = .898, n = 761, p < .001. There was a strong positive correlation between organizational supports and quality-of-life outcomes, suggesting the more organizational supports an older adult with severe disabilities receives, the more quality-of-life outcomes they have present.

In addition to exploring the relation between total outcomes and supports, we were also interested in examining the relation between each of the individual 21 indicators’ outcomes and supports. All of the 21 models were significant (see Table 3), indicating that when an organizational support is in place for an indicator, it significantly increases the odds of the outcome being present. For example, when individualized organizational supports were in place to support people to perform different social roles, older adults with severe disabilities were 60.67 times more likely to have the outcome “people perform different social roles” present. Across all of the 21 topic areas, the impact of organizational supports on the odds of outcomes being present ranged from 9.91 times (people are free from abuse and neglect) to up to 278.73 times (people decide when to share personal information) more likely when a support was present.

Table 3.

Relationship Between Organizational Supports and Personal Outcomes.

Indicator	χ²	R ²	OR	95% CI
People are safe***	259.91	.49	48.96	[28.75, 83.39]
People are free from abuse and neglect***	193.98	.30	9.91	[7.00, 14.03]
People have the best possible health***	256.87	.39	16.25	[11.19, 23.61]
People experience continuity and security***	358.67	.48	35.17	[21.45, 57.66]
People exercise rights***	608.98	.71	95.87	[59.02, 155.75]
People are treated fairly***	671.81	.77	156.87	[91.73, 268.27]
People are respected***	641.66	.74	147.66	[84.81, 257.09]
People use their environments***	567.94	.71	126.49	[73.88, 216.54]
People live in integrated environments***	565.93	.71	101.81	[61.46, 168.66]
People interact with other members of the community***	462.08	.60	43.00	[28.36, 65.21]
People participate in the life of the community***	428.30	.56	42.52	[26.63, 67.87]
People are connected to natural supports***	842.79	.33	16.32	[10.29, 25.87]
People have friends***	395.85	.53	29.19	[19.58, 43.52]
People have intimate relationships***	686.89	.51	25.78	[17.57, 37.82]
People decide when to share personal information***	738.96	.81	278.73	[148.88, 521.85]
People perform different social roles***	494.85	.64	60.67	[38.62, 95.30]
People choose where and with whom to live***	386.84	.65	112.65	[60.60, 209.41]
People choose where to work***	550.19	.69	92.24	[56.78, 153.10]
People choose services***	590.52	.75	171.15	[96.51, 303.51]
People choose personal goals***	690.93	.78	177.59	[102.28, 308.36]
People realize personal goals***	581.74	.69	87.62	[53.61, 143.22]

Note. The independent variable in each model was the organizational support for that indicator; the dependent variable was the personal outcome for that indicator. R² = Nagelkerke R²; OR = odds ratio; CI = confidence interval.

***

p < .001.

Disparities in Outcome and Supports

Finally, we were also interested in exploring disparities in outcomes and supports among older adults with severe disabilities. There was a significant relation between participants’ demographics and their outcomes, F(29, 734) = 3.46, p < .001, R² = .13. The following variables were significant: age; gender; disability: intellectual/developmental, behavioral challenges, brain injury; guardianship status; and residence type. There was also a significant relation between participants’ demographics and their organizational supports, F(29, 726) = 2.92, p < .001, R² = .11. The following variables were significant: age; gender; disability: intellectual/developmental, behavioral challenges, brain injury, “other” disabilities not listed; guardianship status; and residence type (see Table 4).

Table 4.

Correlates of Personal Outcomes and Supports.

Variables	Outcomes				Supports
Variables	B	SE	β	t	B	SE	β	t
Constant	9.17	1.76		5.21***	9.70	1.99		4.87***
Age (in years)	0.07	0.02	.11	3.00**	0.07	0.03	.09	2.49*
Woman (ref: Man)	0.88	0.37	.09	2.39*	0.91	0.41	.08	2.20*
Disabilities
Intellectual/developmental disability	−2.72	0.68	−.16	−3.99***	−2.21	0.76	−.12	−2.89**
Seizure disorder/neurological problems	−0.29	0.44	−.02	−0.66	−0.57	0.50	−.04	−1.13
Mood disorder	−0.94	0.48	−.07	−1.94	−0.68	0.55	−.05	−1.24
Anxiety disorders	−0.43	0.51	−.03	−0.84	−0.86	0.57	−.06	−1.51
Behavioral challenges	1.47	0.53	.11	2.77**	1.84	0.60	.12	3.06**
Other mental illness/psychiatric diagnosis	−0.28	0.56	−.02	−0.50	−0.13	0.62	−.01	−0.21
Personality/psychotic disorder	−0.99	0.61	−.06	−1.63	−0.71	0.68	−.04	−1.04
Physical disability	−0.37	0.63	−.02	−0.58	0.39	0.71	.02	0.54
Impulse-control disorder	−0.19	0.64	−.01	−0.30	−0.44	0.71	−.02	−0.61
Limited or no vision—legally blind	−0.25	0.85	−.01	−0.29	0.11	0.93	.00	0.12
Hearing loss—severe or profound	−0.39	0.77	−.02	−0.51	−0.47	0.86	−.02	−0.55
Brain injury	−2.60	1.27	−.08	−2.04*	−2.94	1.42	−.08	−2.07*
Other disabilities not listed	0.81	0.70	.05	1.16	1.63	0.79	.08	2.07*
Race (ref: White)
Black or African American	0.77	0.57	.05	1.35	0.59	0.64	0.04	0.93
Latinx	−2.13	1.19	−.06	−1.79	−2.05	1.42	−0.05	−1.45
Indigenous American	−0.03	1.44	−.001	−0.02	1.36	1.54	0.03	0.88
Other	1.49	1.87	.03	0.80	3.52	2.08	0.06	1.69
Primary method of communication (ref: Spoken language)
Face/body expression	0.81	0.49	.07	1.67	0.78	0.55	0.06	1.42
Other (e.g., communication device, sign language)	−0.62	0.92	−.02	−0.67	0.15	1.02	0.01	0.15
Guardianship status (ref: Independent decision-making)
Assisted decision-making	−0.60	0.51	−.06	−1.18	−1.15	0.57	−0.10	−2.00*
Full/plenary guardianship	−1.52	0.51	−.14	−2.98**	−1.46	0.57	−0.13	−2.56*
Other	−2.11	1.02	−.08	−2.07*	−3.19	1.14	−0.11	−2.80**
Residence type (ref: Own home)
Provider-owned or provider-operated home	−0.47	0.56	−.04	−0.84	−0.25	0.62	−0.02	−0.41
ICFDD, nursing home, and assisted living	−2.28	0.95	−.10	−2.40*	−2.54	1.07	−0.10	−2.37*
Host family/family foster care	−2.21	1.25	−.07	−1.76	−1.84	1.40	−0.05	−1.31
State-operated HCBS group home	0.14	1.33	.004	0.10	0.76	1.53	0.02	0.49
Other (includes family homes)	−0.54	1.65	−.01	−0.33	−1.79	1.84	−0.04	−0.98

Note. B = unstandardized beta; β = standardized beta; t = test statistic; ICFDD = intermediate care facility for people with developmental disabilities; HCBS = home and community-based services.

p < .05. **p < .01. ***p < .001.

Discussion

Older adults with disabilities may have unique experiences and face different challenges than older adults who acquire disabilities as a result of old age; this is especially true for people with severe disabilities. Yet, to our knowledge, there is very little research about the quality of life of older adults with severe disabilities. The aim of this study was to explore the quality-of-life outcomes of older adults with severe disabilities. Our findings revealed the majority of older adults with severe disabilities had fewer than half of the 21 quality-of-life outcomes present. In fact, only 2.44% of participants (n = 19) had all 21 outcomes present.

Furthermore, we found that while most older adults with severe disabilities in our sample were healthy and safe, and free from abuse and neglect, the overwhelming majority were lacking in community integration, relationships, and choice and opportunities. Although health, safety, and protection from abuse and neglect are important and foundational, especially given the high rates of abuse people with disabilities face (Baladerian, 2013; Shapiro, 2018; U.S. Department of Health and Human Services, Office of Inspector General, Administration on Community Living, & Office for Civil Rights, 2018), they in and of themselves do not represent quality of life—many more things are important to make life meaningful. For example, indicators related to relationships—people perform different social roles, people have intimate relationships, people are connected to natural supports, and people have friends—were among some of the least frequently present outcomes. Yet, research has found relationships tend to enhance peoples’ quality of life; benefits of social relationships include improved emotional well-being, more favorable mental health, increased sense of belonging, stronger self-worth, and lowered stress (Fulford & Cobigo, 2018; Petrina, Carter, & Stephenson, 2014; Ward, Atkinson, Smith, & Windsor, 2013). Moreover, for people with disabilities in particular, relationships with peers with disabilities can increase self-acceptance, decrease internalized stigma, and help people navigate an ableist world (Chernomas, Clarke, & Marchinko, 2008).

In addition to relationships, many of the areas of quality of life that were least present among older adults with severe disabilities related to choice, opportunity, and civil rights, such as people choose where and with whom to live, people choose services, people choose where to work, people choose personal goals, and people exercise rights. For example, only 16.50% of the 800 older adults with severe disabilities in our sample chose where and with whom to live. Yet, according to the Medicaid home and community-based settings (HCBS) settings rule (Centers for Medicare and Medicaid Services, 2014b), long-term services and supports should be directed by peoples’ preferences and goals. The Centers for Medicare and Medicaid Services (2014a) notes HCBS must “optimize autonomy and independence in making life choices; and facilitate choice regarding services and who provides them” (p. 2). In addition, the Americans with Disabilities Act (1990) and Olmstead v L.C. (1999) have also reinforced people’s right to choice and community integration. Despite having the right to live in and be integrated into the community, our findings revealed approximately two thirds of older adults with severe disabilities did not live in integrated environments. This indicator on the Personal Outcome Measures® simply requires that people use the same environments used by people without disabilities (for living, work, school, community [leisure, shopping, banking, places of worship, etc.]), yet the overwhelming majority of participants did not have this item present (The Council on Quality and Leadership, 2017a). Clearly a stronger community infrastructure, especially for older adults with severe disabilities, is necessary to support people to live in integrated environments.

Our findings also suggest the lack of quality-of-life outcomes among older adults with severe disabilities was largely attributed to the lack of organizational supports. The majority of participants received approximately half of the 21 possible organizational supports. Moreover, only 5.01% of our sample (n = 39) received individualized organizational supports for every area of quality of life. Although organizations cannot always control the presence of personal outcomes, organizations do have control over the individualized supports they provide to facilitate those outcomes. Our findings indicate, when people receive organizational support for a personal outcome, they have a significantly higher likelihood of having that outcome in their lives. For example, when individualized organizational supports were in place, older adults with severe disabilities were 43 times more likely to participate in the life of the community. Organizational supports related to participating in the life of the community entail knowing what the person would like to do in their community, knowing how often the person would like to engage in community activities, providing the person with access to information about options for community participation, and providing support for the person to do the things they want to do. In essence, these are all basic parts of person-centered services—knowing the person’s preferences, providing them with true informed choice and opportunities, and providing supports to help facilitate those preferences. Unfortunately, often person-centered practices are philosophies, rather than practices (Friedman, 2018a). A cultural shift is necessary for true person-centered practices to succeed.

Organizations can begin making these changes by targeting the disparities unearthed in this study. For example, people with full/plenary guardianship and “other” forms of guardianship had fewer quality-of-life outcomes present compared with people with independent decision-making. In the United States, courts tend to give guardians broad sweeping powers and “rarely limit the guardian’s authority” (Salzman, 2011, p. 173). Salzman (2011) argues that the current U.S. sweeping guardianship system violates the Americans with Disabilities Act (1990) and Supreme Court decision Olmstead v. L.C. (1999) because it does not limit decision-making rights in the least restrictive manner. However, as a result of the emphasis on self-determination and empowerment, there has been a movement in the United States to shift from broad sweeping powers of guardianship to supported decision-making, which is a less restrictive guardianship model that creates opportunities for people with disabilities to exercise legal decision-making capacity (Gooding, 2013; Salzman, 2011; VanPuymbrouck, 2017). Future research should examine whether there is a relation between supported decision-making and quality-of-life outcomes.

Participants with IDDs and participants with brain injury both had lower quality-of-life outcomes than participants with other types of disabilities. These disparities may in part be due to the fact that people with IDDs and brain injury also received fewer organizational supports than people with other disabilities. It may also be due in part to the hierarchy of disability, wherein both the disability community and people without disabilities favor certain disabilities over other disabilities; for example, people with physical disabilities are often placed higher on the hierarchy than people with IDDs (Caldwell, 2011; Charlton, 1998; Deal, 2003; McClimens & Taylor, 2003). These disparities may also be related to a tendency to focus on duty to care for people with cognitive disabilities, while minimizing risk and emphasizing health and safety beyond all else. There is a “perceived trade-off between autonomy and safety” (Heller, Arnold, van Heumen, McBride, & Factor, 2012, p. 77). Although health and safety are indeed important and foundational, they alone do not comprise quality of life. Instead, many other social determinants play a large role not only in people’s quality of life but their health as well (U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, n.d.).

Older men (vs. women) with severe disabilities had fewer quality-of-life outcomes. Although more research is necessary to determine the reasons behind this disparity, it may be due to the fact that men also received fewer organizational supports than women. There may also be an interaction between gender and age as research suggests women without disabilities tend to live longer than men without disabilities (Austad, 2006; Zarulli et al., 2018).

Older adults with severe disabilities who lived in an intermediate care facility for people with developmental disabilities (ICFDDs) had fewer quality-of-life outcomes present than older adults with severe disabilities who lived in their own homes. This finding is consistent with research that has found better outcomes in community-based settings than institutional settings (Beadle-Brown et al., 2016; Larson, Lakin, & Hill, 2013). Although those opposed to deinstitutionalization often argue that people need more care than the community can provide and that institutions result in higher quality care (Bagenstos, 2012), research has found people with severe disabilities benefit from deinstitutionalization and community residential supports and have better outcomes in the community (Lakin, Larson, & Kim, 2011; Mirenda, 2014; Young, 2006).

Our findings also revealed a significant relation between the age of older adults and their quality-of-life outcomes. Organizations may pay more attention to the oldest old (80 and older) and provide them with more support to facilitate their outcomes as a result. Moreover, this finding may also be due to the fact that although research suggests many older adults without disabilities expect to acquire more impairments as they age, increased challenges do not necessarily impact their perceptions on their quality of life as long as they psychologically adapt (Levasseur et al., 2008). As the existing research about this phenomenon is not specific to older adults with severe disabilities, it would be beneficial to conduct further research to explore if this trend continues among older adults with severe disabilities.

Future Research and Implications for Practice

Because older adults with severe disabilities are a growing population, more research is necessary regarding the quality of life of older adults with severe disabilities. For example, as our findings also revealed the significant impact organizational supports can have on the quality-of-life outcomes of older adults with severe disabilities, future research should be conducted to explore organizational policies and procedures aimed at supporting older adults with severe disabilities. Older adults with severe disabilities are a unique population that require person-centered supports; without an adequate evidence-base, organizations not only might not know how to adequately provide support but also may unintentionally reinforce the disparities unearthed in this study. Moreover, in addition to being an indicator of the quality of people’s lives, quality-of-life data are also critical for social and public policy (Gellert, 1993). Such data can help guide public policy, including prevention or intervention efforts, as well as funding (Gellert, 1993). Furthermore, quality of life as a construct is particularly important to the disability field as it can demonstrate the effectiveness of service programs and interventions (Hoffman, Marquis, Poston, Summers, & Turnbull, 2006; Lee, Harrington, Louie, & Newschaffer, 2008).

Moreover, organizations can also conduct the Personal Outcome Measures® with the older adults with severe disabilities they support to facilitate service provision. By examining an individual person’s score, organizations can determine where to target supports and services to facilitate the person’s quality of life. For example, if an older adult with severe disabilities scored high in terms of safety outcomes, but low in terms of social roles, the provider could be intentional about implementing services to facilitate the person’s opportunities for social roles. Organizations can also aggregate Personal Outcome Measures® scores across all of the older adults with severe disabilities they support to determine opportunities for improvement across their service lines. Doing so will also allow them to compare the outcomes and supports of older adults with severe disabilities to the other populations they support to determine if, and where, disparities exist, and to utilize this information to design programs to help reduce these disparities.

Limitations

When interpreting these results, a number of limitations should be noted. First, the majority of our sample was White, which does not mirror the demographics of the United States. Data also only reflect people receiving some sort of formal services. As this was a secondary data analysis, the researcher did not have the ability to ask additional questions or add additional research variables. Also, exploring interactions was outside the scope of this study. Interviewer reliability was tested at the time of certification, rather than necessarily during these interviews. Moreover, although Bonferroni correction was used to control for the use of multiple models, Bonferroni correction is a conservative measure. We believe these limitations should also be interpreted as opportunities for future study.

Conclusion

As a result of advances in not only medical care and health services but also societal changes, people with severe disabilities are living longer than ever before. Although this presents us with new opportunities to support people with severe disabilities, it also will challenge the service system in new and profound ways. How the service system is prepared to support people with severe disabilities as they age, including as they age in place, is largely unknown. This is particularly pertinent as the findings of this study revealed that the quality of life of older adults with severe disabilities is significantly impacted by the receipt of organizational support. As such, findings from this study regarding older adults with severe disabilities’ personal outcomes and the organizational supports they received should be utilized to facilitate the quality of life of people with disabilities as they age.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Carli Friedman

Editors-in-Charge: Meghan M. Burke and K. Charlie Lakin

Author Biography

Carli Friedman is the Director of Research for CQL | The Council on Quality and Leadership. Her work explores quality of life, community integration, and ableism.

References

Americans with Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328, (1990).

Austad

S. N.

(2006). Why women live longer than men: Sex differences in longevity. Gender Medicine, 3, 79-92. doi:10.1016/S1550-8579(06)80198-1

Bagenstos

S. R.

(2012). The past and future of deinstitutionalization litigation. Cardozo Law Review, 34(1), 1-48. doi:10.2139/ssrn.2005301

Baladerian

(2013). Findings from the 2012 survey on abuse of people with disabilities. Retrieved from http://disabilityandabuse.org/survey/findings.pdf

Beadle-Brown

Leigh

Whelton

Richardson

Beecham

Baumker

Bradshaw

(2016). Quality of life and quality of support for people with severe intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities, 29, 409-421. doi:10.1111/jar.12200

Bilotta

Bowling

Casè

Nicolini

Mauri

Castelli

Vergani

(2010). Dimensions and correlates of quality of life according to frailty status: A cross-sectional study on community-dwelling older adults referred to an outpatient geriatric service in Italy. Health and Quality of Life Outcomes, 8, Article 56. doi:10.1186/1477-7525-8-56

Caldwell

(2011). Disability identity of leaders in the self-advocacy movement. Intellectual and Developmental Disabilities, 49, 315-326. doi:10.1352/1934-9556-49.5.315

Centers for Medicare and Medicaid Services. (2014a). Fact sheet: Summary of key provisions of the 1915(c) Home and Community-Based Services (HCBS) waivers final rule (CMS 2249-F/2296-F). Retrieved from https://www.medicaid.gov/medicaid/hcbs/downloads/hcbs-setting-fact-sheet.pdf

Centers for Medicare and Medicaid Services. (2014b). Medicaid program; State plan home and community-based services, 5-year period for waivers, provider payment reassignment, and home and community-based setting requirements for Community First Choice and Home and Community-Based Services (HCBS) waivers (CMS 2249-F/2296-F). Washington, DC: Department of Health and Human Services.

10.

Charlton

(1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.

11.

Chernomas

W. M.

Clarke

D. E.

Marchinko

(2008). Relationship-based support for women living with serious mental illness. Issues in Mental Health Nursing, 29, 437-453. doi:10.1080/01612840801981108

12.

The Council on Quality and Leadership. (2017a). Personal Outcome Measures®: Measuring personal quality of life (3rd ed.). Towson, MD: Author.

13.

The Council on Quality and Leadership. (2017b). The Personal Outcome Measures® 2017: Measuring outcomes now and into the future. Towson, MD: Author.

14.

Coyle

C. E.

Kramer

Mutchler

J. E.

(2014). Aging together: Sibling carers of adults with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 11, 302-312. doi:10.1111/jppi.12094

15.

Davidson

P. W.

Heller

Janicki

M. P.

Hyer

(2004). Defining a national health research and practice agenda for older adults with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1, 2-9. doi:10.1111/j.1741-1130.2004.04001.x

16.

Deal

(2003). Disabled people’s attitudes toward other impairment groups: A hierarchy of impairments. Disability & Society, 18, 897-910. doi:10.1080/0968759032000127317

17.

Evenhuis

Henderson

C. M.

Beange

Lennox

Chicoine

(2001). Healthy ageing—Adults with intellectual disabilities: Physical health issues. Journal of Applied Research in Intellectual Disabilities, 14, 175-194. doi:10.1046/j.1468-3148.2001.00068.x

18.

Friedman

(2018a). Building the framework for IDD quality measures. Towson, MD: The Council on Quality and Leadership, the Institute for Public Policy for People with Disabilities, and Mosaic.

19.

Friedman

(2018b). The Personal Outcome Measures®. Disability and Health Journal, 11, 351-358. doi:10.1016/j.dhjo.2017.12.003

20.

Fulford

Cobigo

(2018). Friendships and intimate relationships among people with intellectual disabilities: A thematic synthesis. Journal of Applied Research in Intellectual Disabilities, 31(1), e18-e35. doi:10.1111/jar.12312

21.

Gellert

(1993). The importance of quality of life research for health care reform in the USA and the future of public health. Quality of Life Research, 2, 357-361. doi:10.1007/ BF00449431

22.

Gooding

(2013). Supported decision-making: A rights-based disability concept and its implications for mental health law. Psychiatry, Psychology and Law, 20, 431-451. doi:10.1080/13218719.2012.711683

23.

Heller

Arnold

van Heumen

McBride

Factor

(2012). Consumer-directed support: Impact of hiring practices on adults with I/DD and families. International Journal of Integrated Care, 12(9), 76-87.

24.

Hoffman

Marquis

Poston

Summers

J. A.

Turnbull

(2006). Assessing family outcomes: Psychometric evaluation of the Beach Center Family Quality of Life Scale. Journal of Marriage and Family, 68, 1069-1083. doi:10.1111/j.1741-3737.2006.00314.x

25.

Lakin

K. C.

Larson

S. A.

Kim

(2011). Behavioral outcomes of deinstitutionalization for people with intellectual and/or developmental disabilities: Third decennial review of U.S. studies, 1977-2010 (Vol. 21). Minneapolis, MN: Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

26.

Larson

S. A

Lakin

K. C.

Hill

(2013). Behavioral outcomes of moving from institutional to community living for people with intellectual and developmental disabilities: U.S. studies from 1977 to 2010. Research and Practice for Persons with Severe Disabilities, 37, 235-246. doi:10.2511/027494813805327287

27.

Lauer

McCallion

(2015). Mortality of people with intellectual and developmental disabilities from select US state disability service systems and medical claims data. Journal of Applied Research in Intellectual Disabilities, 28, 394-405. doi:10.1111/jar.12191

28.

Lee

L. C.

Harrington

R. A.

Louie

B. B.

Newschaffer

C. J.

(2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147-1160. doi:10.1007/s10803-007-0491-0

29.

Levasseur

Desrosiers

Noreau

(2004a). Is social participation associated with quality of life of older adults with physical disabilities? Disability and Rehabilitation, 26, 1206-1213. doi:10.1080/09638280412331270371

30.

Levasseur

Desrosiers

Noreau

(2004b). Relationships between environment and quality of life of older adults with physical disabilities. Physical & Occupational Therapy in Geriatrics, 22(3), 37-53. doi:10.1080/J148v22n03_03

31.

Levasseur

Desrosiers

Tribble

D. S.-C.

(2008). Subjective quality-of-life predictors for older adults with physical disabilities. American Journal of Physical Medicine & Rehabilitation, 87, 830-841. doi:10.1097/PHM.0b013e318186b5bd

32.

Levasseur

Tribble

D. S.-C.

Desrosiers

(2009). Meaning of quality of life for older adults: Importance of human functioning components. Archives of Gerontology and Geriatrics, 49(2), e91-e100. doi:10.1016/j.archger.2008.08.013

33.

McCallion

McCarron

Fahey-McCarthy

Connaire

(2012). Meeting the end of life needs of older adults with intellectual disabilities. In Chang

Johnson

(Eds.), Contemporary and innovative practice in palliative care (pp. 255-270). Rijeka, Croatia: IntechOpen.

34.

McClimens

Taylor

S. J.

(2003). The organization of difference: People with intellectual disabilities and the social model of disability. Mental Retardation, 41, 35-46. doi:10.1352/0047-6765(2003)041<0035:TOODPW>2.0.CO;2

35.

McIntyre

Kraemer

B. R.

Blacher

Simmerman

(2004). Quality of life for young adults with severe intellectual disability: Mothers’ thoughts and reflections. Journal of Intellectual and Developmental Disability, 29, 131-146. doi:10.1080/13668250410001709485

36.

Mirenda

(2014). Revisiting the mosaic of supports required for including people with severe intellectual or developmental disabilities in their communities. Augmentative and Alternative Communication, 30, 19-27. doi:10.3109/07434618.2013.875590

37.

Neugarten

B. L.

(1974). Age groups in American society and the rise of the young-old. The Annals of the American Academy of Political and Social Science, 415, 187-198. doi:10.1177/000271627441500114

38.

O’Leary

Cooper

S. A.

Hughes-McCormack

(2017). Early death and causes of death of people with intellectual disabilities: A systematic review. Journal of Applied Research in Intellectual Disabilities, 31, 325-342. doi:10.1111/jar.12417

39.

Olmstead v. L. C., 527 U. S. 581 (1999).

40.

Overpeck

(2019, April 24). “Listening” strategies when people communicate without words: Guidance for encouraging communication. Capstone e-Newsletter. Retrieved from https://c-q-l.org/resource-library/resource-library/all-resources/listening-strategies-when-people-communicate-without-words

41.

Petrina

Carter

Stephenson

(2014). The nature of friendship in children with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 8, 111-126. doi:10.1016/j.rasd.2013.10.016

42.

Roebroeck

M. E.

Jahnsen

Carona

Kent

R. M.

Chamberlain

M. A.

(2009). Adult outcomes and lifespan issues for people with childhood-onset physical disability. Developmental Medicine & Child Neurology, 51, 670-678. doi:10.1111/j.1469-8749.2009.03322.x

43.

Salzman

(2011). Guardianship for persons with mental illness: A legal and appropriate alternative? Saint Louis University Journal of Health Law & Policy, 4, 279-330.

44.

Shapiro

(2018, January 8). The sexual assault epidemic no one talks about. National Public Radio (NPR). Retrieved from https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about

45.

Thomas

Barnes

(2010). Life expectancy for people with disabilities. NeuroRehabilitation, 27, 201-209. doi:10.3233/NRE-2010-0597

46.

Thornicroft

(2011). Physical health disparities and mental illness: The scandal of premature mortality. The British Journal of Psychiatry, 199, 441-442. doi:10.1192/bjp.bp.111.092718

47.

U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (n.d.). Social determinants of health. Retrieved from https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health

48.

U.S. Department of Health and Human Services, Office of Inspector General, Administration on Community Living, & Office for Civil Rights. (2018). Joint report: Ensuring beneficiary health and safety in group homes through state implementation of comprehensive compliance oversight. Washington, DC: Author.

49.

VanPuymbrouck

(2017). Supported decision making in the United States: A white paper. Towson, MD: The Council on Quality and Leadership.

50.

Vos

De Cock

Petry

Van Den Noortgate

Maes

(2010). What makes them feel like they do? Investigating the subjective well-being in people with severe and profound disabilities. Research in Developmental Disabilities, 31, 1623-1632. doi:10.1016/j.ridd.2010.04.021

51.

Ward

K. M.

Atkinson

J. P.

Smith

C. A.

Windsor

(2013). A friendships and dating program for adults with intellectual and developmental disabilities: A formative evaluation. Intellectual and Developmental Disabilities, 51, 22-32. doi:10.1352/1934-9556-51.01.022

52.

Young

(2006). Community and cluster centre residential services for adults with intellectual disability: Long-term results from an Australian-matched sample. Journal of Intellectual Disability Research, 50, 419-431. doi:10.1111/j.1365-2788.2006.00788.x

53.

Zarulli

Jones

J. A. B.

Oksuzyan

Lindahl-Jacobsen

Christensen

Vaupel

J. W.

(2018). Women live longer than men even during severe famines and epidemics. Proceedings of the National Academy of Sciences, 115, E832-E840. doi:10.1073/pnas.1701535115