Respite is temporary relief for caregivers and families.
It is a service in which care is provided to an adult or child with special needs to give the primary caregiver time for a break.
Respite care allows families to:
Many families prefer respite where care is provided in the home, where the care recipient is most comfortable, and the home is best equipped for any special needs. Whether that care is provided by an individual respite worker hired by the family or provided by an agency that recruits their own workers, the care provided at home allows a caregiver time to get out of the home to pursue personal interests, or to rest & relax at home wherever they can arrange to have uninterrupted personal time to themselves. Ideally, respite services in the home could be arranged any time during a 24-hour day, 365 days per year.
This is the simplest arrangement for respite. Someone to visit, entertain, and supervise a care recipient while the caregiver is away or occupied in another activity. Someone with whom to go see a movie with, go out for a meal, take a walk with, or engage in a shared activity or interest. Friends and family may provide this type of respite, paid or unpaid. This may be particularly attractive to care recipients who want to be independent, or who prefer to be with people their own age.
The person providing respite care is identified or selected by the family, probably trained by the families themselves. Typically, this is offered through a voucher program that allows family caregivers to locate, hire, train and pay their own respite workers. This type of respite may be available in-home or out-of-home.
Respite is offered in a provider’s home. While this could be a family day care home, a trained volunteer’s family home or a foster family home, the home-like setting would be more familiar and comfortable to the care recipient. Many of these homes are licensed under state regulations for foster homes or group homes.
This out-of-home respite model uses existing space to provide respite. It may be a day care center, church, community center, school or other setting. Respite centers offer regular daily or intermittent respite programming (e.g. after school hours or one weekend day per month). These programs employ trained staff and/or volunteers.
Children, Adolescents, and/or Adults with disabilities are placed outside of their family homes and live together in a home-like environment with trained, rotating 24 hour staff. Utilizing existing space/vacancies in the group home for respite provides care recipients with a semi-independent living experience. Group homes for older individuals may also provide respite services. These foster or group homes are regulated and licensed by the state, often managed by a non-profit or for-profit corporation. Respite in these settings may be available infrequently and may fulfill emergency needs as a priority to other requests.
Some long-term residential facilities have a specified number of “beds” set aside for short-term respite. These can extend to community residences, such as group homes or supervised apartments, but most often are nursing homes and other state-run facilities. Increasingly, assisted living programs or nursing homes for older population offer respite for overnight, weekend or extended stays.
Cooperatives and time-banks have developed in a few communities, especially in communities where services are limited. In an informal association, parent and family caregivers “trade” services with each other. This exchange allows families to schedule respite dates, and fees are usually not assessed. It works well for families whose children or other family members have similar disabilities. These are usually funded and supported through a non-profit or for-profit entity.
Developed by United Cerebral Palsy of America, respite is created through a partnership between private sector entities, participating hotels, and respite agencies. Through Respitality, caregivers typically get a hotel room, dining, and entertainment while a local respite program provides respite care in the family’s home or an out-of-home setting. This is usually a special one-time event for a caregiver and is not available in many communities.
Due to the special needs of children and adults with high care needs, hospitals are often the only source of high-quality care with medical support available 24 hours a day/365 days a year. Small community hospitals with beds available or low weekend occupancy may provide care that provides parents and caregivers a sense of security during respite. Crisis care nurseries may be available in larger communities for high need patients, or pediatric support for medically fragile children. The Veterans (VA) Medical Centers may also offer respite for eligible veterans.
Many places around the country offer camps (either integrated or adaptive) for day or overnight experiences for children and adults with disabilities, chronic or terminal illnesses. Camps can be a positive experience for the camper, as well as a respite break for parents and caregivers. Vacations clubs or groups, activity-based outings, vocal or dance clubs that serve adults with disabilities may also offer families a respite experience. Participants are often matched or grouped with a “buddy” to assist them during the activity. These programs typically schedule events & activities throughout the year and are staffed with paid and volunteer workers. More activity-based respite programs are developing for older adults with cognitive and/or physically impairments.
Also known as Adult Day Services, these centers provide a break for the caregiver while also providing health, therapeutic, or social activities for adults with disabilities and/or chronic health care conditions, such as Alzheimer’s, that increase their care needs. Some centers limit their services to a dementia-specific population while others serve a broader population. Generally, these programs offer respite from several hours a day to a full day (six -eight hours) during the week. Most do not offer weekend or overnight services.
The placement of an in- home respite care worker during an unplanned or planned event, or the temporary placement of the care recipient outside the home, to substitute for the caregiver. Emergency respite care may be provided on one or more occasions.
An emergency is an unplanned event that results in the unavoidable absence of the primary caregiver or back up caregiver from the home. Unplanned events threaten the health and safety of the care recipient or the caregiver (which thereby places the care recipient in danger.)
Emergency respite programs offer funding and/or resources to support caregivers of children & adults with special needs. It is only provided when caregivers have an urgent need for respite but supports a caregiver’s decision to determine where care will be delivered and by whom through advance planning. Without advance planning, a request for emergency respite may be expedited through an agency response protocol but decisions on how respite is delivered will be made by others. All types of respite programming can be used in an emergency.
Services may cover some or all of the following circumstances:
We suggest you start your search by contacting Nevada Care Connection, a collaborative working to streamline access to programs and services for older adults, people with disabilities, caregivers and their families.
Nevada Care Connection partners with community organizations to serve as Resource Centers. These resource center service areas cover the entire state in providing one-on-one assistance.
The Resource Centers help people:
Respite services are funded in a variety of ways. Many programs are fully funded so are free. Others are partially funded and are available for a sliding scale fee. Others require private payment.
Each program has its own eligibility criteria that is often linked to payment options. For example, some programs only serve veterans who are at a nursing home level of care.
Since respite could be any break from care, it can also be creatively arranged, often at no or little cost. Here are some examples:
Remember, Respite Refuels Caregivers! So don’t let eligibility or access to programs become barriers that stop you from getting respite! Find ways to create these “windows of opportunity” to take some time for yourself! Please share your ideas about how you found respite!
Desperate though caregivers may be for a temporary respite from their care responsibilities, many care recipients are resistant to strangers coming into their home to help. The help may be perceived as an invasion of privacy, a loss of independence, or a waste of money. Yet in-home assistance is often critical in offering caregivers a break and time to relax and rejuvenate.
There are ways to make this transition easier. Here are some tips for making your loved one feel more comfortable with in-home help:
Begin by using the care provider or facility only a couple of hours at a time, then add hours as your loved one builds a relationship with the care provider. Just try it out for a short time then evaluate how it is working.
Express your understanding of those feelings. If possible, get your loved one involved in choosing the care provider or activity. He or she will feel more invested and comfortable with the decision.
Expressing the need as yours, rather than your loved one’s helps maintain her sense of dignity and independence. You can also add that having someone else with them allows you not to worry while you are gone. Make it clear that it is temporary, and you will be coming back.
Doctors are often seen as authority figures and your loved one may be more willing to accept help if she feels that she is required to do so. With children, you can say, “That’s the rules.”
Even if this is not the real reason, often people will allow someone in to clean when they “don’t need” care for themselves. Other reasons like cooking a meal may also work.
This strategy may work for budget conscious individuals if it is, in fact, paid for by others or provided without charge. Your loved one may be more open to using the service since she does not feel that she is spending money for it.
By introducing the respite care provider as a friend of yours you are helping to establish trust and rapport between the provider and your loved one. You can also say that your “friend” is the one who needs company and is excited to spend time with you. By having him or her over your loved one is helping him out.
By presenting the situation as short-term, you will give some time for your loved one to form a relationship or become comfortable with care as part of her normal routine and give you a chance for a well-deserved break.
Here are a few steps you can take to determine if you can receive compensation for caring for your family member:
Nevada’s Personal Care Services program is a Medicaid program that provides assistance with Activities of Daily Living so that people with disabilities or a chronic health issue may remain living independently in their home. This program allows certain family members, excluding spouses and legal guardians, to be hired and paid as the personal care provider.
Phone:
Nevada Medicaid: (800) 525-2395 (opt. 1, then opt. 4)
Caregiver Eligibility:
Anyone (excluding spouses)
Care Recipient Eligibility:
The State of Nevada has a No Wrong Door (NWD) initiative to provide a single point of entry where people can find objective information for one-on-one assistance on options for long term care. As part of the NWD initiative, families and caregivers who are in need of resources and resource navigation can contact:
Nevada Care Connection: Nevada Care Connection is a website where someone who is looking for long term care services and/or other resources in our communities can assess their needs or contact their respective ADRC.
Aging and Disability Resource Centers (ADRC): Resource Navigators provide assessments, information, referrals, advocacy, eligibility, planning and application assistance.
Resource Navigators can also help with Medicare/Medicaid, VA benefits, food, housing, medical care, caregiver assistance, transportation, disability assistance, energy assistance and SO Much More!
Nevada 211: Is a resource where individuals can call or go online to find information and resources in Nevada. There is someone who answers calls 24/7 and can connect them to the resource they are seeking.
The Nevada Aging and Disability Services Division’s Home and Community Based Waiver (HCBW – formerly CHIP) provides non-medical services to older persons to help them maintain independence in their own homes as an alternative to nursing home placement. They provide short-term relief up to 24-hours of care for the primary caregiver.
The Family Preservation Program provides financial assistance to family members caring for their relatives with severe or profound developmental disabilities so that the family member can remain at home avoiding costly out of home placements.
Community Advocate: The Community Advocates are also here to help and provide guidance as needed and can offer one-time emergency financial assistance to ensure sustainability and well-being of individuals.
All these resources intersect and can direct you to long-term services to maintain independence in your home.
Some examples of assistive technologies are:
For more information about types of assistive devices, check out the following resources:
Respite is about preserving you as a caregiver, while caring for your loved one. The idea of respite is to delay out of home placement, but there may be circumstances where this is necessary. There is no shame in asking for help for yourself. If you should need additional help with caring for your loved one, you can explore programs through the state or county that could possibly provide you with assistance. If caring has become too burdensome to manage at home, there are out of home options for you to consider.
