RUNNING HEAD: Using Technology

Using Technology and Remote Support Services to

Promote Independent Living of Adults with
Intellectual Disability and Related Developmental Disabilities

Marc J. Tassé
Jordan B. Wagner
Minje Kim

The Ohio State University

Nisonger Center

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Citation:

Tassé, M. J., Wagner, J. B., & Kim, M. (2020).

Using Technology and Remote Support Services to Promote Independent
Living of Adults with Intellectual Disability and Related Developmental Disabilities.
Journal of Applied Research in Intellectual Disabilities, 33, 640-647.

https://doi.org/10.1111/jar.12709.

Authors’ Note
This manuscript was made possible with a grant from the Ohio Department of Higher Education
and support from the Ohio Department of Developmental Disabilities. The authors want to
acknowledge the support from John Martin and Kyle Corbin as well as the input from all the
individuals with developmental disabilities and their family members. Portions of the
information in this article have appeared in an unpublished White Paper (Wagner, Tassé, Davies,
& Stock, 2018). Correspondence regarding this manuscript should be addressed to Marc J. Tassé,
The Ohio State University Nisonger Center, 1581 Dodd Drive, Columbus, Ohio USA 43210.
Email: [email protected].
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Abstract

The use of technologies is a newer form of support that can contribute to increased independence

for adults with intellectual and developmental disabilities. This paper reviewed the use of remote

support services, which is a waiver supported service that includes smart-home technologies and

remote staff support that can be called upon as needed. Remote support technologies are seen as

a part of the solution to addressing the lack of direct support staff available to provide inhome

supports. Through focus group and telephone interviews we asked users of remote support

services about their experience, including what they liked most and least about their experience

with these technologies. Overall, increased independence and a sense of security and home

safety where identified as the two principal benefits. We discuss the findings and their

implications on how we might improve the perception of this service and increase the uptake.
Using Technology 3

Using Technology and Remote Support Services to Promote Independent Living of

Adults with Intellectual Disability and Related Developmental Disabilities

“For people without disabilities, technology makes things easier. For people with

disabilities, technology makes things possible” (IBM, 1991; p. 2). That statement made almost

30 years ago is ever so true today. Technology can play a critical role in creating more

opportunities and supports for individuals with intellectual disability and related developmental

disabilities (IDD), including increasing their success in performing everyday tasks and promote

increased independence while resulting in a decreased reliance on direct support professionals

(DSP; ANCOR, 2017). A report to the President titled America’s Direct Support Workforce

Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S.

Economy identified this trend in 2017 (PCPID, 2017). This document proposed that the U.S.

Department of Health and Human Services, Administration for Community Living assist states

in responding to the DSP workforce crisis by providing technical assistance and financial

incentives to promote technology solutions in long-term supports and services, including remote

support services (also called remote monitoring services).

Remote support services are a relatively new and emerging service that uses technology

to support individuals with developmental disabilities who receive long-term supports and

services (e.g., Medicaid waiver services) in their home. Therefore, the number of American

states that include services which are similar to remote support services are minimal. In fact, of

50 states and the District of Columbia, only 18 offered remote support technologies as a support

service in 2018. The first state to begin offering this type of support service dates back to 2002

and that number is projected to increase in 2019 to 20 states (Tassé, 2019).

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In Ohio, remote support services are defined as follows: “Remote support means the

provision of supports by staff of an agency provider at a remote location who are engaged with

an individual through equipment with the capability for live two-way communication. Equipment

used to meet this requirement shall include one or more of the following components: (a) Motion

sensing system; (b) Radio frequency identification; (c) Live video feed; (d) Live audio feed; (e)

Web-based monitoring system; or (f) Another device that facilitates live two-way

communication” (Ohio Department of Developmental Disabilities, 2019). The individual with

developmental disabilities can call using the remote support video communication device in their

home and speak with a remote support staff on duty. The remote monitoring staff is available to

assist via the remote link or, if needed, can request an on-call DSP to go the individual’s home

and provide in-person assistance. In general, remote supports include a variety of technologies,

including home-based sensors, automated medication dispensers, two-way communication

systems, video cameras, and other technologies that allow a remotely located caregiver to

monitor the health and safety of individuals with IDD living independently. The remote

caregiver can respond to different situations via video chat, phone calls or if needed, dispatching

backup support person who might be a family member, friend, or staff to provide hands-on

assistance.

The number of people in America who are likely to need long term services and supports

is projected to rise from 12 million in 2010 to 27 million by 2050 (ANCOR, 2014). Although,

the national average for growth of any career position is 7%, the Bureau of Labor Statistics

projects there will be a 26% increase in demand for Home Health Aides and Personal Care Aides

by 2024. With a 26% increase in demand for these services, we are beginning to face what the

2017 ANCOR Workforce Report called the “Disability Services Workforce Crisis.” The report
Using Technology 5

suggested that the extreme increase may be, in part, due to an increase in prevalence of autism

spectrum disorder, aging caregivers, and an aging baby-boomer population.

In addition to the increase in the demand for the supports and services available within

the developmental disabilities home health care industry, there are challenges in hiring, training,

and retaining a workforce of DSPs. Nationwide, annual staff turnover rates for DSP workers

ranges from 38% to 50% (Hetzler, 2016). The organization Disability Matters has estimated that

with a 40% turnover rate in DSP workers, an adult with intellectual disability needing DSP staff

support in both residential and day services probably will receive services from as many as 160

different support staff over a ten year period (Disability Matters, 2017). Overall, the result

suggests that there are not enough DSP workers in the field to meet the needs of all people with

disabilities. Some identified this as a crisis to be reckoned with (Hewitt & Larson, 2007; Parish

& Lutwick, 2005).

In-person caregivers will always be a necessary resource for in-home health care. With

the introduction of remote support services, available staff members can be distributed to

those other situations that need ands-on support while reducing the overall need of available staff

presence. For adults with IDD and other disabilities who want to reduce the physical presence

of a staff in their home, remote support technologies can meet a wide range of support needs,

including those of people with substantial healthcare care needs. Adoption of remote support

enables provider agencies to serve more individuals without increasing personnel or overtime

hours.

Ethical and safety concerns will need to be addressed with the expansion of remote

support services. States like Pennsylvania and Ohio require that the organization conducting
Using Technology 6

remote support services explains to the individual involved the extent to which the service would

limit their privacy (Pennsylvania Department of Human Services, 2017; Ohio Department of

Developmental Disabilities, 2019). The use of surveillance video cameras has been identified to

be of particular concern among those who have apprehensions regarding the use of remote

support services. With the advent of YouTube, combined with the high rates of DSP turnover in

the IDD service industry, parents and advocates have expressed concern over captured

surveillance video ending up on the internet, especially with some states requiring data retention

for up to seven years (Davis & Wellems, 2011). Compliance with the Health Insurance

Portability and Accountability Act (HIPAA) also has far reaching implications for remote

support systems. As with any new intervention for any vulnerable population, human rights

questions have surfaced. While states (e.g., Missouri) require case-by-case approval from local

Human Rights Committees, some advocates have suggested that the use of remote support

should be solely up to the individual receiving services and his/her family.

In summary, while the benefits of remote support services are being recognized,

there remain concerns regarding the use of this service. The aims of this research project

included the study of user experience with remote support services using a focused group

methodology combined with telephone interviews. The goal of this study was to identify

barriers to using this technology and ways to improve the experience of individuals with

developmental disabilities using this service.

Method

Participants
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Although the number of people who use remote support in Ohio has now increased to

more than 600, when this study began its recruitment there was a relatively small number of

individuals who using remote support services (n=190). A complete list of the N=190

individuals using remote support services was provided by the Ohio Department of

Developmental Disabilities (DODD). As recommended by Holloway and Galvin (2010), we

used the list of individuals using remote support services (N=190) to recruit a purposive sample

of participants who had experience with remote support services. To do so, the second authors

contacted the Service and Support Administrators (SSA; i.e., case managers) of all individuals

identified using remote support services. Some SSAs provided a phone number for us to contact

the individual using remote support services directly, while others contacted the individuals

themselves and shared with them our contact information for them to contact us. A total of 56

participants (29.5%) agreed to participate.

All participants were receiving publicly-funded Home and Community Based Services (HCBS)

IDD waiver services. Which means that they presented with a qualifying IDD diagnosis and

required significant support needs to live independently in the community (Ohio Department of

Developmental Disabilities, 2019). All participants were adults. The chronological age of the

final sample of 56 participants ranged from 21 to 74 years with mean age of 41.3 years and a

standard deviation of 14.5 years. Thirty one percent (n=17) of the assessed individuals were

males. Twenty-four participants were adults with IDD who either currently used or

had recently used remote support services and the remaining 32 participants were

parents or guardians of adults with IDD who currently used or had previously used remote

support. The distribution of participants by race consisted of 93% of White/Caucasian (n=52),

and 7% of African American (n=4). Twenty-eight respondents (50.0%) lived alone and 21
Using Technology 8

respondents (37.5%) lived with at least one roommate. Seven respondents (12.5%) omitted to

respond to this question. All participants who used remote support services did so through an

Individual Options (IO) HCBS IDD waiver. The length of time of use of this service

ranged from < 1 year to more than 5 years. Seventy-one percent of respondents (35 of 49) had

been using remote support services for 2 years or less. Forty (40) respondents (82%) reported

they were currently using remote support services; whereas, nine respondents (18%) had

previously used remote support but were no longer using remote support at the time of their

participation in this study.

Procedure

Before conducting our focus groups and telephone interviews, a series of preliminary

group discussions were conducted with self-advocates and parents/guardians of sons/daughters

of adults with IDD during local self-advocacy and Arc conferences1 to learn about their

knowledge and opinion of remote support services. With each of these groups, the concept of

remote support was explained then the participants were asked what they thought they might like

and dislike about remote support. The responses from these discussions helped develop

questions for the focus groups and telephone interviews.

Focus groups were conducted using a multiple-category design. In this case, the focus

groups included both adults with IDD who use remote support and the parents/legal guardians of

those who use remote support. Each focus group was held at a public library in a

meeting/classroom space. The focus groups each lasted approximately 60 - 75 minutes and

1
The Arc of Ohio is a statewide advocacy group composed predominantly of family members of individuals with
IDD. The Arc conferences are held bi-annually in different locations across the state and attract large numbers of
adults with IDD and their family members.
Using Technology 9

included a series of open-ended questions (see below). The questions were designed with a

specific flow. The focus groups began with an opening question that everyone could easily

answer then a transition question that prepares participants for the key questions. The open-

ended questions were centered on getting to their experience and opinions regarding remote

support services. The focus group and telephone interviews ended with a question that allowed

the participants to provide generic input without a specific prompt.

Telephone interviews were conducted using the same questions and methods of analysis

that were used with the focus group participants.

Focus Group and Interview Questions:

 Tell us your name and how long you have used remote support.

 How did you first hear about remote support

 Tell me about your experience with remote support:

o How did you start using remote support?

o What do you like about remote support?

o What do you NOT like about remote support?

o How much privacy do you feel you have in your home?

 If your best friend was thinking about using remote support, would you recommend that they

use them?

 We want to find ways to expand remote support services outside of the home. What

technology would help you be more independent in your community?

 We want to improve remote support. Is there anything we should have asked/discussed but

did not?
Using Technology 10

Aside from providing a definition of remote support services, no other information or

education about remote support services was provided to the participants. All participants were

asked a series of open-ended questions in a conversational format, responses were separated into

themes and overlapping topics, then, frequency of non-duplicative response categories

mentioned was recorded. Originally, the category “safety,” was separated into two categories,

emergency support and home security. However, we concluded that having support in

emergency situations and feeling a greater sense of security in one’s home was virtually the same

as feeling greater safety. Therefore, non-duplicated instances where emergency support or home

security were combined into the category “safety.”

Three separate focus groups inclusive of adults with IDD and their parent/guardian were

conducted with a total of 12 participants. Since this was a relatively small sample, and running

additional focus groups was not possible, we sought to complement the experience reported by

these individuals with a series of semi-structured interviews with other adults with IDD and their

caregivers who had experience using remote support services. An additional 44 participants were

asked the same open-ended questions during one-on-one telephone interviews, for a total of 56

respondents. IRB approval had been obtained for this study from the Ohio State University

Behavioral Sciences Committee. Descriptive statistics were obtained using SPSS 24.0.

Analysis

We used a qualitative analytic approach to assessing responses obtained from our

participants of both the focus groups and semi-structured interviews. Participant responses to the

questions were documented and analyzed using a thematic content analysis approach. The

content analysis was conducted independently by the second author on the manifest responses of
Using Technology 11

the participants and then reviewed and discussed with the first author. We then categorized the

participants manifest responses into common themes (e.g., home safety) and noted how often

participants responded using each category.

Results

To investigate what part of remote support services appealed to the participants, they

were asked about their experience with this service and what they liked most about remote

support services. Safety was the number one benefit endorsed by users of remote support,

with 36 of 56 respondents giving this response when asked the question. Participants

also responded that they felt safe and were less worried about break-ins into their home. They

also mentioned that they felt that they had access to someone in case of an emergency, such as a

fire. Approximately half of the respondents (26 of 56) also responded that increased

independence was a benefit that they liked about using remote support services. Twenty

respondents also identified having the presence of a remote support staff (via a video link) as

something that they liked about their remote support services. The health aspect (e.g.,

medication reminders) was another benefit reported by a smaller number of participants (16

of 56) regarding their experience with remote support.

For both adults with IDD and parents/guardians, safety was the most frequently reported

benefit of having remote support services (see Table 1). The second most frequent response for

adults with IDD was their affinity for the remote support staff; Whereas parents/guardians, noted

the increased independence afforded by having remote support services in their son’s/daughter’s

home. It is noteworthy that half of the adults with IDD reported that remote support staff was

something that they liked most about remote support services. A common concern
Using Technology 12

among adults with IDD and family members is that they might be less socially engaged because

of the resulting reduction in staff hours. However, interactions with the support staff remained

something that respondents liked about their remote support services. Another noteworthy

response was that 45 of 47 of our participants (96%) said they would recommend using remote

support services to their friends and others who have IDD.

Insert Table 1 Here

We also asked our participants to identify the negative aspects to using remote support

services (e.g., “What do you not like about remote support?”). Eleven respondents

(20%) said “privacy” was one concern they had with remote support. With another seven

respondents (13%), malfunctioning technology was the second most commonly cited aspect of

remote support that they disliked. One respondent said that the technology occasionally “gets

screwed up”. When this happens, the caregiver was asked to fix the technology under the

direction of the remote support vendor. The remote support vendor lived far away. Therefore, if

there was a major issue, it could take several days before the problem was fixed. There were

other more isolated responses given by the respondents (see Table 2). In all, 26 participants

(46%) did not provide a response to the question of what they did not like about remote support

services.

Insert Table 2 Here

Some respondents said they had a problem organizing staff backup. One of these

respondents said they had three different providers because some providers did not provide

backup support staff and others did provide this service but were not able to provide the backup

support staff. The participant (parent/guardian) continued to say: “I think [the different
Using Technology 13

providers] get a little confused about what their role should maybe be...We’ve tried to outline

[specific roles] in the ISP [Individual Service Plan] and make it a little bit more clear.” This

issue was resolved, but it took some effort for all parties to be a working solution. The problem

of agencies not knowing how to effectively recruit and deploy a workforce of DSP to provide

“back-up” support could be a barrier to this service being widely adopted.

Discussion

Through the use of focus groups and telephone interviews, we collected responses

regarding 56 individuals who either currently use or previously used remote support services and

their guardians. In the experience of many people who participated in the focus groups and

phone interviews, using remote support resulted in greater independence by being provided with

a safe environment and personal time without having staff in the home. These results suggest that

individuals who used remote support had experienced change on several different levels.

Whatever the change may be, remote support is enabling many Ohioans with IDD to lead lives

they want in the least intrusive manner for them.

When asked “How much privacy do you feel you have in the home,” 45 of 51

respondents reported they either felt “some privacy” or “lots of privacy” in their home. Although

participants initially expressed concerns about privacy with the use of remote support services, a

majority of respondents reported feeling “some” to “a lot” of privacy in their home with these

services in place. Only 6 of the 51 respondents (12%) reported they had “no privacy.” In fact,

one mother reported that remote support provided more privacy than her son ever experienced

with the presence of staff providers. Another respondent reported that one characteristic about

remote support that they did not like was that it afforded too much privacy. Also, when further
Using Technology 14

analyzed the data, it was found that only 8.3% of individuals with IDD endorsed privacy as their

concern, while 29% of parents or guardian reported privacy as a concern of the remote support

service.

While people with IDD, their families, service providers and funding entities begin

discovering and working through initial adjustments to using remote support services, the current

momentum of remote support as an industry service model is being fueled by the potential of its

positive benefits. As has been briefly discussed, after considering issues of safety and how it can

increase individual choice and independence, consideration should be given to the potential

benefits of its cost-effective provision of services to individuals for whom remote support may

be appropriate. Given different approaches across states regarding funding of long-term supports

and services, real world data on the cost effectiveness of remote support continues to be collected

as an increasing number of state and provider agencies begin to make remote support services

available. This movement will also likely result in adjustments to funding and remote support

provision approaches. It will also be important to study what happens to cost savings that may

occur in terms of who benefits (states, funding agencies, service agencies, individuals with IDD)

and what is done with any savings. States may opt to retain any savings realized from remote

support efficiencies to obtain fiscal relief, to control increases in Medicaid costs, or to provide

addition waiver services for more individuals who may be waiting for services. Other states may

return the savings back to county boards or service providers who could use these funds to

support increased wages and benefits for DSPs or to otherwise enhance service provision.

DSPs play an important role in the lives of many individuals with IDD. However, their

presence in the home may at times unintentionally promote dependence more than independence

of adults with IDD (McKenzie & Macleod, 2012; Vorhaus, 2007). There is some evidence that
Using Technology 15

the use of remote support services may reduce the reliance on DSP workers in the home

(CERRIIDD, 2018). While one may anticipate concerns that adults with IDD who use remote

support would feel more isolated and long for the presence of more DSPs, this was not a

concern identified by our participants. When well planned, the reduction in physical presence of

staff in the home should promote increased independence in the performance of tasks of daily

living for individuals using remote support.

The primary goal of remote support services is not to replace DSP workers. Rather, it

is intended as an element of the services/supports options to promote independent living and

leading a self-determined life for adults with IDD. Being able to reduce the need for DSP

worker hours in one area allows more flexibility to shift these resources to support individuals

for whom have a DSP worker may be more critical to their health and safety.

Similarly, promoting self-reliance can be viewed as promoting opportunities to be

challenged, learn new skills and recognize potential. A study that compared task completion of

individuals using remote support to individuals who were not using remote support suggests that

in the physical presence of a person providing prompts, was found to promote a similar (if not

worse) task completion rate when compared to not having the physical presence of staff member

(Taber-Doughty, Shurr, Brewer, & Kubik, 2010). While these tasks may have taken a longer

time to accomplish for those who were prompted remotely, the tasks were able to be completed

independent of having staff physically present in the home.

Our study has a number of limitations that need to be considered when interpreting our

findings and conclusions. We have a relatively small sample of participants. Although with only

190 people to draw from, we were able to get input from 56 individuals and need to be cautious
Using Technology 16

in generalizing these findings to all current users of remote support services and especially all

potential users. Our response options were open-ended which might have led to fewer answers

being provided by the participants than had they been provided with response options. Our

decision to use short open-ended questions was driven by a concern to mitigate the potential

effects of acquiesce and responses driven by social desirability on the part of the participants.

Nonetheless, the open-ended nature of the current study allowed for us to see the breadth of

examples of the possible ways that remote support might help with individuals with IDD (Table

3). For example, to the question of “How is your/remote support user’s life different since using

remote supports?” participants provided a variety of responses, including better behavioral health

(less worry, anxiety, etc.), pride, confidence, and able to sleep better. Users of remote support

services self-select to use this service and hence, they may not be a representative group of all

people with IDD. Using remote support services may not be experienced by all individuals with

IDD in the way our participants reported their experience and hence, we should be cautious in

assuming the same positive outcomes would be reported by others. Nonetheless, we see

technology as being misunderstood and under-utilized by service providers as well as individuals

with IDD and their families. Technologies such as remote support services and other smart-

home and assistive technologies may well not be the panacea but they have undeniable potential

to support people with intellectual and developmental disabilities to live more independent and

socially-engaged lives. Technology can be tools to make home-living more accessible and safe,

connect people with services and supports as needed, and create opportunities to accomplish

things that would have been oftentimes be otherwise impossible. This vision is being now

adopted by states as illustrated in Governor’s declaring their state a “technology-first state” when
Using Technology 17

it comes to identifying and providing supports and services for individuals with IDD (Kasich,

2018).

More research is warranted to study the use and impact of remote support services and

related technologies in the home. We need to better understand the impact these technologies

might have on increased independence both in the home and in the community but also its

potential impact on social isolation and loneliness. On the positive side, more research is also

needed to explore how these technologies can also support greater independence of individuals

who have complex health, mental health, and behavioral health needs. It’s important to include

individuals with developmental disabilities in studies about their experience with the services

they receive. Using participatory action research approaches to increasing our understanding of

the benefits of these support services seems to be the ideal approach to future research studies.
Using Technology 18

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Using Technology 22

Table 1.

The positive aspects of remote support services reported by users

Adults with IDD Parents/Guardians

(N=24) (N=32)

Safety 14 22

Independence 6 20

Remote Support Staff 11 9

Health 6 10

Technology 6 6

Behavioral Health 1 1

Cost Savings 0 1

Feelings of Pride 1 0
Using Technology 23

Table 2.

The concerns about remote support services reported by users.

Adults with IDD Parents/Guardians

(N=24) (N=32)

Privacy 2 9

Malfunctioning technology 1 6

Too frequent checking 2 3

Limitations of technology 1 3

Prefers direct staff 0 4

Difficulties related to back up 0 6

Visitor’s negative opinion 1 1

Inadequate training for use of

0 1
technology

Internet expenses 0 2

Equipment replacement cost 0 1

Others 0 5

Note: Others includes that 1) prefer to see the individuals and to know who provides the remote

support services, 2) cost of remote supports service, 3) the ability to Skype has been removed, 4)

setup took a long time, and 5) difficulty to contact the company providing the services.