The National Family Caregiver Support Program (NFCSP), Area Agencies on Aging (AAAs) and partnering organizations provide an array of services to meet the needs of family caregivers. However, a frequently overlooked problem for many caregivers is the physical strain of caregiving. In fact, caregivers of older adults who experience physical strain are more likely than those with financial, emotional, or social strains to say that they are highly stressed. By helping reduce the physical strain of caregiving, NFCSPs and other aging and disability organizations can help decrease the chances that an older person ends up in a nursing home for a long stay.12
A major source of physical strain such as back injuries among family caregivers is lifting and transferring. Many nursing homes and hospitals have rules against manual lifting and provide mechanical lifting aids for caregiving staff to use. Family caregivers, however, are less likely to be aware of safe lifting techniques or to have access to devices like ceiling lifts. Safe handling guidelines state that 35 pounds is the most a person can safely lift.13
Whenever possible, equipment such as a hoist or mechanical lift should be used for a whole body lift of a non-weight bearing person. Gait belts and slings can help position and provide back-up when assisting a partially weight-bearing person. They can also be used for maneuvering a non-weight-bearing person into a hoist sling.14 NFCSPs should consult with nurses, occupational therapists, and/or physical therapists to learn more about caregiver training on safe handling.
Another source of physical strain is communication problems in caring for a person with dementia. Oftentimes people with dementia become confused due to their inability to interpret signals from their bodies or from their surroundings. This contributes to resistance towards caregivers when they attempt to transfer them, which increases caregivers' risk for physical strain. Training on communicating with people with dementia can help address physical strain from caring for a person with dementia. AT/HM for cognitive impairment--such as activities/games, devices for memory and communication, additional lighting, labels, and signs--can also help in this area.
Homes that are in need of repairs or are not designed to meet the needs of older adults with functional impairments also contribute to increased physical strain. In addition, many family caregivers are themselves over age 60, which raises their risk of physical strain. Home repairs and modifications that may be needed range from removing clutter or repairing a handrail to major renovations like installing a wheelchair ramp, downstairs bathroom, or stair lift.
In addition to increasing safety for family caregivers, a wide range of AT/HM can assist older adults increase their functioning and independence (for examples, see the Text Box to the right). These range from complex technologies, such as telehealth and remote monitoring systems, to simple tools like grab bars and pill boxes. This can reduce the amount of help they need and ease the strain on family caregivers.
This guide presents several strategies NFCSPs can use to include assistive technologies and home modifications (AT/HM) to reduce caregiver physical strain as part of the range of services they offer.15
A Resource List at the end provides resources for additional information and assistance with addressing caregiver physical strain and connecting caregivers to AT/HM.
Example AT/HM Needed by Family Caregivers and Older Adults
ASSESSING HOME SAFETY AND THE NEED FOR AT/HM
Many NFCSPs, in conducting home visits, look for AT/HM that the family may need. In difficult to reach, rural areas, programs sometimes use phone assessments. A strategy that several programs have found helpful is for case managers to bring along samples of commonly used AT that caregivers can try, such as a shower bench.
Case study: Wisconsin ADRCs
In Wisconsin, Aging and Disability Resource Centers (ADRC) Options Counselors bring "AT Kits" with them on home visits. The Wisconsin AT Resource Center (http://www.atresourcecenter.org) worked with the Independent Living Center to develop the AT Kits and provided tools and training for ADRCs on how to introduce AT to caregivers. The kit includes about 90 assistive devices, with some of the smaller items available to test and photos and descriptions of larger items provided in a manual. These include devices for hearing, vision, personal care, cooking, driving, recreation, and more, ranging from pill boxes to electronic lifts.
Some programs use assessment forms or checklists that include questions about AT/HM needs. These tools can help case managers or family caregiver specialists with assessing a caregiver's need for AT/HM. Some relate to home safety and design. Others address caregiver overall health, including physical strain and the need for AT/HM. A list of assessment forms and checklists is provided in the Resource List.
Home Assessment Tips
After the initial assessment and selection of AT/HM, programs noted the importance of follow-up with caregivers over time to ensure the usefulness of the equipment and its correct use. This can help ensure that the AT is used and that people have the AT/HM that is right for them. As an individual ages, or their condition progresses, certain AT may no longer be of use to them and/or they may need different types of AT/HM.
Some caregiver programs partner with other providers to assist with assessments. In some instances, the NFCSP conducts the initial assessment and then refers to another provider for more in-depth assessment as needed. Providers and organizations that may be able to assist with caregiver assessments are listed in the Resource List.
HELPING FAMILIES FIND A CONTRACTOR
NFCSPs can form relationships with local businesses to build a network of local contractors that provide HM services. Through these relationships, NFCSPs can refer people to providers who others have used before and who have a proven record of good results. At the Howard County Office on Aging, staff include a retrofit specialist who can install modifications recommended and paid for by the agency. The specialist also knows reliable contractors in the area and can refer clients to them for services not covered by the agency.
Tips for Helping Make AT Affordable and Available
HELPING MAKE AT/HM AFFORDABLE AND AVAILABLE
Often, family caregivers know what AT/HM they need, but do not know where to find affordable devices and services. NFCSPs can help by including AT/HM in services covered with NFCSP funds. They can also provide access to an AT reuse program and help with accessing other funding sources.
NFCSP supplemental services funds can be used for AT/HM
The federal government sets no specific restrictions on the use of these funds for AT and HM. The Older Americans Act states that supplemental services are to be provided "on a limited basis." Administration on Aging guidance to states suggested defining this as no more than 20% of spending. Although this is a general guideline and not a rule, most states limit their supplemental services to 20% or less. In states we spoke with, the per person limit for all supplemental services ranged from $250-$750 a month, or $1,500 a year. Some states allow caps to be waived if funds are available. In other states, services are approved on an individual basis. Many programs use NFCSP funds to help pay for AT/HM. Some also help pay for installation and maintenance of equipment.
Case Study: Philadelphia AAA
In Philadelphia, Title III-E provides a one-time $2,000 benefit for HM, plus $250 a month that can be used for respite, services, and/or supplies. When a caregiver applies for services, the case manager visits the home, discusses the NFCSP and entitlement benefits, and asks if the client is interested in services. Legislation has been proposed to increase the one-time benefit but has not passed.
Another way to help caregivers access AT is to build or refer to an AT reuse or lending program. AT reuse programs can help people get the AT they need at lower cost, if not free. Lending programs are useful for individuals who want to try out a device before buying it or who need a device to use for a short period of time. Agencies can educate families about donation of their used equipment. In Connecticut, the assessments inquire about AT/HM or medical equipment the family has and no longer uses. If the family has unused equipment, they are asked if they would be willing to donate it. Numerous organizations throughout the country are involved in AT reuse or loan programs, including State Assistive Technology Projects, Centers for Independent Living, hospitals, churches, Washington Area Wheelchair Society, Easter Seals, American Cancer Society, and Craigslist.
Case Study: Illinois NFCSPs
In Illinois, NFCSPs have formed many partnerships on AT/HM, including with Centers for Independence Living (CILs), State AT Projects, and Easter Seals programs. One of the CILs publishes a statewide newsletter that includes a section on used AT/HM that can be purchased at a low cost. The Springfield CIL provides access to used AT equipment. It also has a statewide newsletter of equipment for sale or giveaway. Most of the Illinois senior centers will accept walkers, benches, canes, and sometimes wheelchairs.
Case Study: Indiana AAAs
In Indiana, one of the AAAs operates a "lending library" of equipment that caregivers may borrow for a period of time. The library primarily includes sensory or monitoring technology to assist family caregivers of older adults with Alzheimer's disease or other dementia. The equipment library was created as part of the Alzheimer's Disease Support Services Program (ADSSP) grant. Some of the sensory technology requires families to pay the provider a monthly fee. Some families have been able to pay the fee through private pay; others had the equipment uninstalled. Another Indiana AAA partners with a church that has a lending library.
Although supplemental service can help, these funds are limited and usually insufficient to pay for high cost AT/HM that many caregivers need. Agencies can overcome this challenge by leveraging other sources of funding for AT/HM. To purchase large, expensive items (e.g., installation of a ramp) often requires patching together support from multiple sources. A case manager or "funding specialist" can help with coordinating funding sources. The Resource List lists some of the many potential AT/HM funding sources available. Some of the funding sources can assist caregivers. Others focus on AT/HM for the care receiver, which can also benefit the caregiver.
PUBLIC OUTREACH TO RAISE AWARENESS OF CAREGIVER PHYSICAL STRAIN AND AVAILABLE SOLUTIONS
Many caregivers, including many who pay privately for services, are not connected to Aging Network services and may not know about AT/HM that may help reduce their physical strain. The Resource List describes various resources and approaches for raising awareness among family caregivers and professionals who work with caregivers. These strategies include working with physicians and other health care providers to bring information to family caregivers and presenting at events and places where older adults and caregivers go.
Resources for Additional Information on AT/HM
Below are resources that provide information about AT/HM and can help NFCSPs with assessing the need for and choosing AT/HM and with finding ways to obtain and pay for it.
The Administration on Aging
This resource connects you to a number of different resources on services for older adults and their family members. They also have a page on the history and purpose of the National Family Caregiver Support Program.
AbleData provides information on AT and rehab equipment. Their website contains many fact sheets and consumer guides to help with selecting AT for various impairments. On the "Library" page, choose "AbleData's Publications".
Phone: 800-227-0216 or 301-608-8998 / TT: 301-608-8912
This website contains information on aging in place and independent living for older adults and people with disabilities. Some of the resources are specific to HM and home repair. The site also offers a Home Modification Resource Guide. The guide covers general information, assessment, financing, product/program, program development and implementation, and research/education. For these resources, go to the "Resources" Page and click on the "Library" link.
The Center for Assistive Technology and Environmental Access (CATEA)
CATEA operates a National Public Website on Assistive Technology. Here, NFCSPs and caregivers can learn about AT and other community resources for people with disabilities.
Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)
RESNA operates the National AT Technical Assistance Partnership (NATTAP) website. This project assists state and territory AT projects. The website provides state-specific info on device loan, re-use, and demonstration projects.
Phone: 703-524-6686 / TTY: 703-524-6639
Technology for Long-Term Care
Tech for Long-Term Care provides info on over 1,200 products that can help with long-term care needs. These include devices for assistance call, bathing, communication and memory, dressing, eating, fall management, and incontinence. It also includes products for leisure, lifting and transferring, medication management, mobility, wander management, and wound care.
National Institute for Occupational Safety and Health (NIOSH)
Family caregivers perform many of the same tasks as home health care workers. NIOSH suggests guidelines for the safe practices among this workforce, which also apply to family caregivers. NIOSH's science blog on physical strain among home health care workers (http://www.cdc.gov/niosh/blog/nsb041610_nurse-erg.html) suggests devices that can increase safety in home care. This blog links to resources to learn more about ergonomics in home care. One resource is the NIOSH Hazard Review: Occupational Hazards in Home Healthcare. Another is an article by Parsons, Galinsky, and Waters on Preventing Musculoskeletal Disorders in Home Healthcare Workers. A second NIOSH blog focuses on safe patient handling in healthcare settings (http://www.cdc.gov/niosh/blog/nsb092208_lifting.html).
Phone: 800-CDC-INFO (800-232-4636) or TTY: 888-232-6348
Fall Prevention Center of Excellence
Fall Prevention Center of Excellence information for individuals and families as well as information for service providers on falls prevention. The information for service providers includes videos, tools, articles, and a database of continuing education courses for nurses, social workers, care managers, physicians, and other professionals.
The Center for Healthy Aging
The Center for Healthy Aging assists aging service providers to implement healthy aging programs. Resources provided include manuals, toolkits, research, examples of model health programs, and links to websites on health topics. It includes resources on fall prevent and home safety.
This Caring Home
This website provides useful info for programs and caregivers on home safety for people with dementia. It also applies to older adults and people with disabilities. The site also assists with finding products to ease the burden of caregiving. Case managers and family caregiver specialists can use this website and/or refer caregivers to it.
North Dakota State University. Assistive Technology and Older Adults: The Journey Through Caregiving.
This guide is useful for both caregivers and NFCSPs. It helps organizations prepare family caregivers to care for an older person with a chronic disease or disability (http://www.ndsu.edu/ndsu/aging/caregiver/pdf/assistive/manual.pdf).
ASSESSMENT FORMS AND CHECKLISTS
Rebuilding Together Home Safety Checklist: This checklist was developed with the Administration on Aging. Search "Home Safety Checklist" on the Rebuilding Together homepage.
CaregiverNJ Home Safety Assessment Checklist: The New Jersey Institute on Technology developed this checklist with the NJ Department of Health and Senior Services. It provides home safety guidelines and a specific checklist for people with Alzheimer's disease and other dementias. Search "Home Safety Assessment Checklist" on the CaregiverNJ homepage.
AARP Home Fit Guide and brochure: AARP provides many resources that could help NFCSPs assist caregivers with AT/HM. This includes a Home Fit Guide and a brochure on No-Cost/Low-Cost Home Improvements for a More Comfortable Safer, and Easy-to-Live-In Home.
Phone: 888-687-2277 or (TTY) 877-434-7598
IDEAS Consulting Environment and Communication Assessment Toolkit: This Toolkit and corresponding webinar focuses on people with dementia in long-term care settings, but can also help with family caregiving at home. The Toolkit and corresponding webinar focus on identifying environmental barriers to communication and changing the environment to facilitate communication.
Centers for Disease Control and Prevention (CDC), Toolkit on "What You Can Do to Prevent Falls." This toolkit describes what families can do to prevent senior falls and increase home safety.
Phone: 800-CDC-INFO (800-232-4636) TTY: 888-232-6348
Promoting Safety and Function Through Home Assessments
This article provides an overview of home safety assessments and three different home assessments in the appendix.
POTENTIAL SOURCES OF ASSISTANCE WITH ASSESSMENTS
Occupational therapists (OTs), physical therapists (PTs), or registered nurses (RNs): Several caregiver programs provide referrals to OTs, PTs, or RNs (either on staff or an outside provider) when a need for AT/HM is identified, or encourage the family to contact their family doctor for an OT referral. These professionals can provide more in-depth assessments, identify issues, make additional referrals, and OTs can help older people increase function and community participation. In some instances, as in the Philadelphia AAA, OT services are paid for with NFCSP funds. In Connecticut, the Home Care Program for Elders provides global assessments, refers to an OT if AT is deemed necessary, and pays for the OT or physical therapist services. Communication between the case manager and the OT is very important. The OT should also conduct a follow-up visit if possible.
To learn more about the benefits of occupational therapy, visit the American Occupational Therapy Association.
Phone: 301-652-2682 / TDD: 800-377-8555
Direct service workers, such as home health aides and personal care aides, could informally assess and help identify AT/HM needs. AAA staff could reach out to service agencies about the available AT, so that they can train aides going into homes on AT and HM. These workers have hands-on experience assisting the person and could suggest AT/HM that would be helpful. The Salt Lake County Office on Aging has a partnership with their local home health agency. Case managers speak with home health aide supervisors to determine if the people they serve may need AT/HM.
Non-profit community service organizations: In California, the Area 4 Agency on Aging stated that they contract with various organizations that offer AT/HM to conduct assessments. A case manager provides in-depth assessments for services in the home. Certified nursing assistants conduct assessments for in-home services, such as personal care and homemaker services. Agencies that provide HM services conduct home assessments. Home Delivered Meals Assessors conduct assessments and they review a home safety checklist with the potential client and/or family member. These contracted providers must educate clients regarding fall prevention and complete a simple Home Safety checklist. Programs in both California and Iowa have worked with the non-profit organization Rebuilding Together, to assess for and recommend/install HM in the home. The Honolulu Office on Aging works with Project Donna in Oahu County, Hawaii, a faith-based volunteer organization that provides home assessments and other services.
Departments of Rehabilitation Services/Vocational Rehabilitation often will conduct home assessments.
Care transitions teams can conduct assessments prior to hospital discharge. Agencies noted the importance of reaching people during transitions from a hospital. This is a chance to provide equipment that can help with independent living and prevent nursing home entry. Some of the AAAs in Illinois havebegun to work with hospitals and discharge planners on education and outreach.
Disability organizations, including Centers for Independent Living (CILs) and disability specific organizations, such as the MS Society, offer another resource for assessments. In Utah, the CILs can conduct home evaluations. The AAAs send a case worker to conduct an in home assessment. If there is a need for a more intensive assessment, a referral to a CIL is given.
AT/HM companies. Some companies provide free in-home assessments. However, AAAs we spoke with noted a need for protections to avoid conflict of interest. Agency staff need to offer choice, remain neutral, and not recommend any particular company's products.
Fire departments: The Springfield, Illinois NFCSP has a partnership with the fire department. The fire department goes into the home and assesses for fall prevention. They also provide and install free smoke detectors. Illinois AAAs also refers caregivers to the Illinois AT program and the caregiver resource center.
POTENTIAL RESOURCES FOR MAKING AT/HM AFFORDABLE AND ACCESSIBLE
The Pass It On Center the National Assistive Technology Reuse Center offers a directory of reuse locations and additional information about and assistance with AT reuse.
Phone: Toll Free 1-800-497-8665 or TDD: 1-866-373-7778
Medicaid and state funded home and community based services programs: In many states, Medicaid and/or state funded home and community based services programs cover some AT/HM. However, this funding is often limited and used for other needed services. The Philadelphia AAA noted that many caregivers do not use Medicaid waivers for AT/HM due to estate recovery. Iowa's Medicaid waiver provides help with purchasing AT/HM for the care recipient. Maryland uses a state-funded Senior Care program to fill gaps in HM and OT services. It provides a recommended cap of $500 per person per month. The funds can be used for flexible services including an in-home aide, respite, and other services. Building relationships with Money Follows the Person (MFP) demonstration programs can also be helpful. These programs are working to increase the use of person-centered, home and community based services. A list of grantees is available here: http://www.mfp-tac.com/Grantees.aspx.
Medicare provides limited coverage of occupational therapy and medical equipment.
State Assistive Technology Projects: The Assistive Technology Act funds a statewide AT program in each of the 50 states and six territories; the majority of these programs support AT device reuse activities, and many operate device loan closets.16 They can help NFCSPs leverage community resources and expand their network. Although some State AT Projects focus on younger adults with disabilities, some aging organizations have found them a useful source for AT for older persons and their caregivers. Illinois AAAs refer caregivers to the Illinois AT Program, which helps people obtain many different types of AT to remain as independent as possible. A state listing is available at the State AT Projects Information Center. State AT Projects may be another resource for conducting home assessments and/or supplying AT/HM. Illinois NFCSPs partner with their State AT Project for these purposes. The Utah Center for Assistive Technology (http://ucat.usor.utah.gov/) provides a loan program, device design and modification, home assessment, assessment of aptitude for using technologies, and other services.
Web: http://www.abledata.com/abledata.cfm? pageid=113573&top=16050&ksectionid=19326&stateorganizations=1
Phone: You can contact AbleData for more information at 800-227-0216 or 301-608-8998.
Centers for Independent Living (CILs): These can be found in the ILRU Directory.
Phone: 713-520-0232 ext. 130 (Voice/TTY)
State and federal veterans assistance programs: The Philadelphia Corporation on Aging refers caregivers to Veterans Administration funds, in addition to other sources of assistance with purchasing AT/HM.
Home repair assistance programs: The U.S. Department of Housing and Urban Development (HUD) provides loans for home improvement and repair and a rural home improvement and repair loan/grant program. The Philadelphia AAA, using state and city funds, has a minor home repair program called SHARP (Senior Housing Assistance Repair Program) which provides services to low income senior homeowners who reside in Philadelphia. The Philadelphia AAA also provides referrals to the Adaptive Modification Program (AMP) which is administered by the Philadelphia Housing Development Corporation. AMP can provide up to $25,000 of home modifications for Philadelphians with disabilities of all ages.
USDA: The USDA provides grant funding and low-interest forgivable loans for people in rural areas. Iowa uses USDA funds for their more rural counties.
Private non-profit organizations (disability organizations, CILs, faith-based): In Alabama, the AAAs typically work with agencies, such as Catholic Charities, other faith-based organizations, and Alzheimer's associations, as a resource for donated products.
Companies: Some companies may offer discount programs for purchasing AT. In Indiana, some AAAs havenegotiated a reduced price with Lifeline or First Alert. These companies provide systems for automatically alerting 911 and the caregiver in an emergency. When the AAAs refer a client, the person can purchase the AT for a negotiated rate. Local construction companies may donate materials. When partnering with an AT company, agencies should make sure to give families a choice and not recommend any particular product.
Self-pay: NFCSPs should encourage and assist private pay individuals to thoroughly review their options for AT/HM. These options could include private insurance, home equity loan, and volunteer help from family and friends. Caregivers may be able to find equipment for sale online (e.g., Google and Amazon) for lower cost than through durable medical equipment (DMEs) companies.
Other: Other possible funding sources for AT/HM include: telecommunications equipment purchase programs, Developmental Disabilities Administration, and Division of Rehabilitative Services. Other sources are high school/community college building trade department, local demonstration projects, and National Institutes for Health Demonstration Grants. In Iowa, the Des Moines school system had a program in their building trades department to assist with AT. One funding stream paid a stipend to students, while other funding streams paid for teachers and equipment to make AT available to older homeowners. Another suggestion was to partner with community colleges.
RESOURCES FOR PUBLIC OUTREACH TO RAISE AWARENESS
Work with primary care physicians (PCPs) and Accountable Care Organizations, on providing information to family caregivers. PCPs are a very important resource for family caregivers. NFCSPs can suggest that family caregivers talk with their doctor about AT/HM. NFCSPs might also partner with PCPs in the community to spread information about supports for caregivers. Other contacts may include chiropractors, orthopedists offices, community health agencies, and pharmacies. NFCSPs may also suggest that family caregivers inform their primary care providers that they are a family caregiver and ask the doctor questions about AT or HM. Their physician may be able to give them information about devices that may make their job easier. They may also be able to suggest what training is available to family caregivers on proper lifting/transferring techniques.
Cornell University runs an Environmental Geriatrics website with helpful information on home safety, HM, housing options, and related resources. The site provides an animated course on "Environmental Geriatrics: Improving Function & Safety". This course may be a good tool to share with primary physicians in the community.
Another resource for physician partners is the American Medical Association guide on Guidelines for the Use of Assistive Technology: Evaluation, Referral, Prescription
Partner with other organizations to disseminate information to caregivers. Possible partners to consider include ADRCs, universities, peer support, online caregiver training programs, CILs, caregiver coalitions, or veteran's assistance programs. ADRCs provide a useful way for the disability and aging communities to learn from each other. Illinois AAAs have worked with veterans' health centers, which refer clients to the AAA. They noted that the veteran's independence program offers a benefit guide for veterans in the state that could be useful for caregivers of veterans. An Illinois AAA has also organized an expo geared toward veterans and caregivers age 50 and over. They offer free information and health screens at the expo.
Provide information about AT/HM at events (fairs, expos, caregiver conferences)--In California, the San Diego County Aging & Independence Services holds caregiver conferences and offers live online workshops. These events include information on AT/HM.
Present about AT/HM in the community--In Wisconsin, the Eau Claire ADRC presents information on AT when requested. Many of the requests for presentations come from senior centers and senior apartment complexes. Other potential places to present are community centers and churches.
Present to large employers--In Connecticut, the North Central AAA presented information about caregiving to employees of a large Connecticut and Massachusetts employer. They set up a booth of information including content about AT/HM. Chambers of Commerce are a potential partner for reaching employed caregivers in the workforce.
Reach out to the media--Newspaper articles have reported on Connecticut's Money Follows the Person Program. The program provides AT/HM for care recipients that are also helpful for their caregivers.
Use State Assistive Technology Projects as a resource: State AT projects assist people with disabilities of all ages in obtaining technology that fits their lives to help them be more independent. The Philadelphia AAA uses Pennsylvania's Initiative on Assistive Technology (PIAT), the state's AT center, as a resource for educating caregivers and older adults.
Work with long-term care insurance agencies or HMOs: These organizations are interested in maintaining the health of family caregivers and their loved ones. They may be willing to disseminate information about NFCSP services as they relate to AT/HM.
Connecting with home builders associations or local home improvement stores: NCSFPs may consider asking these locations if they can disseminate some information about AT/HM in their stores. This can increase awareness in both home builders and family caregivers about AT/HM.