State of Nevada Aging and Disability Services Division Lifespan Respite Program Handbook
Table of Contents Welcome Letter....1 What is Respite?...2 Who Needs Respite?...2 How Much Respite Do I Need?...2 Types of Respite...3 In-Home Respite.. 3 Out-of-Home Respite... 3 How to Find a Respite Provider.4 How to Find Funding.. 5 Burnout Warning Signs...5 Caring for the Caregiver...6 Important Contact Information in Nevada..7 Family Caregiver Tool...8-11
Welcome! In your hands you have a copy of the State of Nevada Lifespan Respite Program s handbook. The purpose of this handbook is to provide caregivers, care recipients, family, friends, advocacy groups, and all those interested with an introduction to respite, resources, and tools available in Nevada. Our objective with this handbook is to make the life of those touched by these circumstances a little bit easier through the power of information and knowledge. There are many challenges when it comes to caregivers and respite. These problems have only accentuated with the difficult economic situation that the state and overall country is going through. Regardless of these obstacles, the Lifespan Respite Program has set many ambitious goals for the good of Nevada s family caregivers and all of those involved. One of those goals is to make respite more accessible and available throughout the entire state regardless of age, location, or condition. This handbook was created to get us a step closer in achieving our mission so caregivers can continue to provide long-term care of their loved one. We hope that you find this handbook useful, beneficial, stress-relieving, and informational for you and your loved ones. Sincerely, Lifespan Respite State of Nevada Aging and Disability Services There are four kinds of people in this world: Those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers. - Former first lady Rosalynn Carter Lifespan Respite Program Handbook Page ~ 1
What is Respite? Respite is an occasional break or temporary relief that is given to those who are caring for a loved one. Let s face it, caregiving can be a lot of work, stressful, and exhausting both physically and emotionally. It can go on for months or even years! So the purpose of respite is to allow caregivers a much needed break from caregiving. Additionally, it provides a break to the care recipient. It has been shown time and time again that when caregivers access respite services it helps sustain the health and wellbeing of the caregiver, helps avoid or delay out-of-home placements, and reduces the likelihood of abuse and neglect. Often, crises can be avoided if the caregiver can have a break from the potentially stressful situations that occur in families. In order to equip a caregiver to continue their work over a long period of time, it is essential that they get a regular break. Who Needs Respite? Family caregivers do not always recognize themselves as caregivers because they are also the Parents, Spouses, Family Members, Friends and Neighbors of the care recipient. They provide care for seniors, children, and adults - people who need help because of special needs, disabilities, chronic or terminal illnesses. Caregivers play multiple roles and perform different types of duties. Caregivers help with the many everyday needs of a recipient like feeding, dressing, and bathing. They make phone calls, arrange schedules, manage insurance issues, grocery shop, and drive care recipients to doctor appointments. They also wear different hats: legal assistants, financial managers, companions, and housekeepers. They often have to take on the overall duties of the care recipient, and still meet the needs of other family members and their own. Many caregivers are also compound or sandwich caregivers, as it is also referred to. This is when a family caregiver undertakes additional care giving roles or provides care to more than one person. This is a very difficult situation for the caregiver that is becoming more common today as life expectancy increases. So who needs respite? Any and all individuals who are caring for a loved one! How Much Respite Do I Need? The timeframe or amount of respite needed depends on the individual and specific needs of both the caregiver and care recipient. Respite has many shapes and forms to accommodate the different needs. The break can be short or long. It might just be a few hours so the caregiver can go shopping, visit friends, or see a movie. It might be a day or two, so the caregiver can tend to personal business or get away for a weekend. Or, it might be a week or two, so that the caregiver can take a vacation and recharge their batteries. Lifespan Respite Program Handbook Page ~ 2
Types of Respite There are many types of respite programs available in the state of Nevada. It is important to be properly informed, so some research will be required, to determine a good fit for both the caregiver and care recipient. By being aware and knowing what type of respite is best will help to make the respite experience pleasant and beneficial. In-Home Respite Respite that is provided in the home is preferred by many families due to its several advantages: Recipient may be most comfortable in the home setting. Recipient does not have to adjust to a different environment. It relieves the stress of transporting the care recipient. Parents/caregivers may be more comfortable if the care recipient does not have to leave the home. The home is already equipped for any special needs the recipient may have. The cost is usually lower. (There may be financial assistance available in your area. For information visit www.nevadaardc.com) Examples of in-home care: private homemaker services, home health agencies, sitter services, family members, and friends among others. Out-of-Home Respite Out-of-home respite also has it benefits and is appealing to many families as it can bring new opportunities for the care recipients. Being outside of their natural environment can provide emotional and cognitive stimulation for the recipient. This may be a particularly attractive choice for teens who are preparing to leave the family home for a more independent living arrangement, as well as giving them the opportunity to be with people their own age. This can also be beneficial and stimulating for aging populations with mild to moderate memory loss. These settings provide an opportunity for them to experience new surroundings as well as meet and develop relationships with new people. Families can also benefit from this type of respite as they are free to enjoy time in their home without the constraints of providing constant care. Please consider the following regarding out-of-home respite. Parent/Caregiver may not be as comfortable or enjoy their respite knowing recipient is not at home. Transportation may be required and special equipment. Care recipient may not like unfamiliar or new environments or may have difficulty adjusting to the changes. The services may be offered in a variety of settings more restrictive than the care recipient s home, such as special medical centers or nursing homes. Examples of out-of-home care: day care centers, camps, community centers, senior centers, and parent cooperatives among others. Lifespan Respite Program Handbook Page ~ 3
How to Find a Respite Provider Finding the right respite provider can be a very difficult and stressful task for the caregiver. Factors like recipient s particular needs and availability of services in the area (especially for the rural areas) can be an obstacle that caregivers face. In order to ease some of this tension Aging and Disability Services Divisions, the Lifespan Respite Program, and its Aging and Disability Resource Center (ADRC) affiliates, located throughout Nevada, are trained and equipped, and will be able to assist you in finding the right provider/s, payment resources available and training options. www.nevadaadrc.com Respite services and funding opportunities may be available to families through: Formal programs that hire and train their staff Informal networks such as parent cooperatives Social Service Agencies (nonprofits) Medicare Medicaid Private Organizations Community Centers Senior Centers Adult Day Centers Adaptive Recreational Centers Veterans Administration Friends and Family Members At this time Nevada does not require individuals to be licensed to provide respite care, so it is very important that you conduct a thorough background check when dealing with individuals who are not associated with companies or agencies. Most agency providers perform background and reference checks for their employees, but do not assume and ask any questions you may have regarding this. Here are a few options that you can do when considering a respite provider: 1. Actual face-to-face interview and/or telephone screening 2. Ask for references and check them 1. Conduct a criminal background check- visit the link below for instructions and forms on how to do it http://nvrepository.state.nv.us/criminal/forms/dps-006%20form.pdf 3. Consider costs and financing for using that particular provider 4. Write a contract that provides specific details 5. Trust your gut feeling We cannot stress enough to get to know the prospective provider as well as possible before committing to anything. We also want to stress that expectations and instructions should be in writing and explained to help assure that all parties understand them and will not need to rely on just memory if difficulties, questions, or emergencies come up. We have attached a caregiver tool at the end of this handbook with important care recipient information that can help with this process. There is also a wide variety of guides available that can assist with the multiple aspects of respite. Visit the ADRC website at www.nevadaadrc.com to access further reading material. Lifespan Respite Program Handbook Page ~ 4
How to Find Funding To find available funding in Nevada contact your local ADRC site. (Contact information on the next page of this handbook). You can also check the Funding Update section of the ARCH National Respite Network and Resource Center website www.archrespte.org for new information on respite funding sources. ARCH assists and promotes in the development of quality respite and crisis care programs in the United States Here are a few possibilities to consider for funding: Medicaid Waivers Medicaid State Plan Medicare Hospice Benefit Military Families and Veterans State Funded Respite Programs Burnout Warning Signs Research has verified that respite is a primary factor in sustaining the quality of caregiver services and preventing abuse and neglect. Respite services help to: Sustain the health and well-being of caregivers Maintain the level and quality of care for the individual(s) receiving services Prevent families and caregivers from entering the child and adult protective services systems Allow individuals with care needs to remain in their homes, maintain the status of the family unit and avoid institutionalization Provide cost effective supports that deter higher-cost services such as emergency or crisis services, or enhanced levels of long term care. The benefits that respite offers are priceless, and that is why it is important to know when you and your loved one are in danger and in need of respite. Here are a few burnout warning signs to look out for: You have much less energy than you used to. It seems like you catch every cold or flu that s going around. You are constantly exhausted, even after sleeping or taking a break. You neglect your own needs, either because you re too busy or you don t care anymore. Your life revolves around care giving, but it gives you little satisfaction. You have trouble relaxing, even when help is available. You are increasingly impatient and irritable with the person you are caring for. You feel overwhelmed, helpless. For information on accessing respite services in Nevada please contact your local ADRC site. Lifespan Respite Program Handbook Page ~ 5
Caring for the Caregiver As a caregiver there are many techniques available to help in reliving the stress of care giving and preserve the health of the caregiver. Here a few things you can practice to help take care of yourself: Set Realist Goals- Do not set yourself up for failure. Set goals that are obtainable and will make you feel good. Remember to give yourself credit for achieving these goals. This also ties in with knowing and being realistic about your limits. Establish them and do not try to go over what you have set. Practice Good Communication- It is important that you acknowledge your feelings and talk to someone you trust and feel comfortable with. Do not expect others to just know your needs. Express them! Maintain Your Health- It is important that you keep up on your own health and consider yourself. Remember to eat well, exercise regularly, sleep well, and rest a little bit every day. Laugh- Laughter and humor can bring balance to your life and emotions. So, keep a positive attitude and remember to enjoy and laugh once in a while. Network with Other Caregivers- Being able to identify and communicate with others going through similar situations can bring a sense of relief and reduce isolation. There are many support groups available specific to medical, emotional, and physical disabilities. You are not alone! Prepare for Care Giving- This is a luxury that most caregivers do not have, but a few things to consider are: educating yourself about the condition, write down your questions when going to the doctor, know about the medical decisions the recipient prefers, know where important documents are like insurance information, wills, advanced directives etc Seek Information- As mentioned earlier in this handbook the power of knowledge and information is key in reliving many stress factors. The more you know the less scary things and situations can be, and allow you to plan better for the future. Learn about your family member s illness and about how to be a caregiver. Consider going to the library for books on the subject matter, read professional articles, or contact your local ADRC site for information. The internet can be a great and accessible tool for obtaining information, just be cautious as to the source or where the article is coming from. Socialize- One of the negative impacts of care giving is isolation. That is why it is important to socialize with friends and/or family, or start a new hobby or return to one you enjoy. The point is to stay involved and active in things you delight in and relax you. Eliminate Negative Talk- A negative mentality affects outlook, productivity, attitude, and most importantly your health. Being positive allows you to handle and look at things with a brighter perspective thus reducing your chances of depression and increasing your life span. Accept Help and Delegate- As a caregiver it is very important that you understand that it is ok to share your work and responsibilities. Don t be afraid to accept the help that others are offering, or delegate to others some of your duties. Lifespan Respite Program Handbook Page ~ 6
Important Contact Information in Nevada Aging and Disability Resource Center (ADRC) www.nevadaadrc.com The Aging and Disability Resource Centers are a no wrong door, single point of entry into the long term services and supports system. The philosophy of the ADRC program is to make sure consumers and their families have accurate information about their choices in their communities and can easily access programs and benefits for which they qualify. ADRC s offer a range of services including information, referral, planning assistance, options counseling, application assistance and follow up. Services are tailored to the specific needs and desires of each consumer. For information on respite services and funding contact your local office: In NORTHERN Nevada: Ron Wood Family Resource Center 2621 Northgate Lane Ste. 62 Carson City, Nevada 89706 (775) 884-2269 www.ronwoodcenter.org Washoe County Senior Services 1155 E. Ninth Street Reno, Nevada 89512 (775) 328-2575 www.co.washoe.nv.us/seniorsrv/ In RURAL Nevada: Lyon County Human Services 1075 Pyramid Street Silver Springs, Nevada 89429 (775) 577-5009 www.lyon-county.org In SOUTHERN Nevada: Rebuilding All Goals Efficiently (R.A.G.E.) 2901 El Camino Avenue Suite 102 Las Vegas, Nevada 89102 (702) 333-1038 www.bteamrage.org East Valley Family Services 1800 E. Sahara Ave. #111 Las Vegas, Nevada 89104 (702) 369-2165 www.eastvalleyfamilyservices.org For more information on The Nevada Lifespan Respite Program contact: Vicki Kemp - Program Manager 3416 Goni Road, Suite D-132 Carson City, NV 89706 Phone: 775-687-4210 Email: vkkemp@adsd.nv.gov Lifespan Respite Program Handbook Page ~ 7
Caregiver Tool This tool will assist you in gathering and putting together information that your provider of choice should know about your care recipient. It will help you organize and condense basic yet key information that your provider will need. Complete the information below and give to your provider of choice. Remember to be as specific as possible. Recipient s Primary Information First Name: M.I: Last Name: Date of Birth: Address: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) Primary Insurance: Policy Number: Phone Number: Secondary Insurance: Policy Number: Phone Number: Prescription Log Drug Name Purpose of Usage Prescribing Doctor Dosage Times Per Day Lifespan Respite Program Handbook Page ~ 8
Physician Information For Recipient: Primary Care Doctor s Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) Doctor s Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) Doctor s Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) Doctor s Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) Lifespan Respite Program Handbook Page ~ 9
Emergency Contact and Phone Book For Recipient: Emergency Contact s First Name: Last Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) First Name: Last Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) First Name: Last Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) First Name: Last Name: City: State: Zip Code: Phone Number: ( ) Cell Phone: ( ) Lifespan Respite Program Handbook Page ~ 10
Additional Information For Recipient: Comments/Instructions: Lifespan Respite Program Handbook Page ~ 11