I have been interning at Helping Hands Respite Care for about four months now, and I can honestly say I have learned more about where I have been, where I am and where I am going than any other time frame in my life. I went into this internship with minimal experience working with individuals with special needs, but still had more than most others in today’s society. Jeff Nunham had asked me in my interview why I would be a good candidate for this position, and I said something along the lines of how I want to become a nurse after I graduate and I love helping people. Both of which are still true, and still important. But as I reflect on these past four months there are many more reasons as to why I thrived at this job, and more importantly why I love it so much.
I go to work every day with the goal of brightening someone’s day, I want to put a smile on my clients face. The funny thing is, without fail, every time I leave work they put a smile on my face. These individuals have taught me how to live life to the fullest; they have made me appreciate where I have come from and what I have. They have taught me to fear less and love deeper. They have taught me to be kind, compassionate and understanding, to everyone.
One of the most important things I have learned is that people with disabilities are still people. They might look different, communicate differently, or live differently than you and I, but they are more powerful than we know. I have learned some of the most important life lessons from my client, an eight-year-old client who is completely non-verbal and non-mobile. He has never said a word to me, but he has reached my heart in a way that words never could.
People will ask me what I do, and I simply explain how I work with people with disabilities and nine times out of ten their response is “Wow this is so awesome, that must be so hard!” And you know what they are right- what we do is hard. It is hard work and a lot of people couldn’t do what we do, but I think to myself when I am working with them about how hard their life is every day. I have moments that are hard- they have days that are hard, months that are hard, years that are hard. So yes, this internship has been hard, but what the clients and families that Helping Hands serve do every day is more difficult and inspiring than what I do.
This organizations and the clients I work with have changed my life, I am proud of the caregiver, friend, sister, daughter, future mother and future nurse that I have become from this experience. What this organization does is special- and I couldn’t be more thankful for the opportunity to work at a place like Helping Hands Respite Care. Thank you.
If you are a client/family, caregiver, or contracting agency, most of you may already be feeling the effects of our switch over from the VINCENT scheduling system to Clear Care Online. For us the decision to switch over was easy, based on the research done before hand. We were propelled by the fact that as an early adopter of the VINCENT system we experienced some disappointment in getting changes made to the system to accommodate our needs or simply to fix glitches. After a month and a half of preparation, and with the help of the Clear Care transition team and a dedicated transition counselor we went LIVE on May 1st and began the change-over transition.
Even with all our hopes for the better solution for the families we serve and the care givers who help us keep our promises – there is never a great time to make a transition. We are so proud of our Office Administrator Janette Lauzon, and our Scheduler Rhonda Mliakoff. Together these two have done a fabulous job of coordinating this transition. Not going to lie, there were frustrations along the way, but we have never had the kind of daily and intensive support from a vendor like we have had from Clear Care.
What the Clear Care Benefits are to the Families We Serve
The Family Room Forum – Each family has their own “room” to communicate with us and the caregivers scheduled to provide care. The Family Room provides a place for communicating back and forth. Family members can request some additional tasks, offer reminders on one-time events which the caregiver may need to be aware of; and likewise, the caregivers can share comments on things that happened during their shift that may help the family. Once you get into the swing of using the Family Room Forum we predict an even better experience for both the families and the caregivers.
Schedule View – The families can see the schedule online, either from your desktop computer or your smart phone. The schedule is a living document and shows the shifts with times and who is covering that shift. The whole month view of the calendar gives you a comprehensive look at a color-coded plan which lets you know which shifts are scheduled, shifts that are still open, those in process and those completed. Notes can be appended to the schedule such as when a caregiver did not show or the family had to call off a shift – this is making the billing process so much easier!
Care Notes – The Clear Care system will hold the details of the Person-Centered-Plans (PCP) including a list of all the required Activities of Daily Living (ADL) and show those needed for a particular shift. When a caregiver checks in via their phone, they will see what is on the schedule for that shift, and when they clock out they will only be able to do so after answering the questions related to the ADL tasks. A simple “YES” if a task was completed, a “NO” with an explanation why. The system will also capture mileage related to any activity where the caregiver took the client out into the community as well as any comments or concerns for the family. This instant capture of care notes creates a foundation for a paperless system and makes for a much better snapshot of what happened on each shift, and that information is always available to the families. The supervisors will also have access. As our caregivers get used to checking in and clocking out, and reporting, we are convinced that the level of care will get even better.
What Clear Care Means to the Administration of Services
As you can imagine the job of administering, scheduling and managing up to 75 caregivers to deliver over 5000 hours of care each month (and growing) to 100 or more families through the six programs offered by Helping Hands Respite Care…it can get complicated. Clear Care is beginning to uncomplicate these processes for us in some meaningful ways.
The paperless care notes system provides far more accurate documentation of what happens on every shift and provides alerts for action items. Already we are finding the system to be intuitive, user-friendly, and much faster.
The information that comes out of the system and immediately interfaces with our billing system provides for a more accurate monthly invoice which reflects the many variables involved such as acuity level, role of caregiver, and variable pay structure of the caregiver in a group setting such as the Respite House, and the specific requirements of the various contract sources. This also translates to a more streamlined payroll process. For example, within our Adult Day Services program those members who attend and receive support from the Veteran’s Administration (VA) must receive a particular rate prescribed by the VA. In the past, reviewing the daily care notes for a particular pay period to determine which caregiver served which member to satisfy the contract would take up to an hour. Now it takes 10 minutes!
We are only just now beginning to realize the benefits of simplifying the scheduling process with Clear Care. It is not uncommon to have to accommodate a last minute change in a schedule due to illness. On Thursday at 5pm a caregiver called in to let us know that she would be unable to fill an overnight/awake shift at the Respite House beginning at 6pm on Friday. By going into the Clear Care system after clicking on the shift that needed to be covered, in just a few minutes we clicked a few buttons to reflect the criteria we needed in a caregiver for this shift, including finding all those that could possibly work that time frame without going into overtime. We found eight potential workers which met our criteria. Their names were clicked and a text message was sent to all asking if they wanted the shift. Within 5 minutes, the shift was filled!
As you can tell, excitement is rising for us as we continue the transition begun on May 1st. On June 1 we will be doing our first billing process and with any luck it will yield the same kind of benefits we have realized on the scheduling and payroll side of the equation.
Bottom line, it looks like we have a winner. We know it may take time for everyone to get up to speed on using this new system …which means the information and accuracy is only going to improve. If you are having challenges with the system, please do not hesitate to reach out to us so we can help you with your learning curve. This is a system that supports us all in ways that help us continue to keep the families that we serve in a position to receive the full benefits of respite, while their loved one gets the best care possible.
In follow up to our recent caregiver satisfaction survey, below is an analysis of the results.
Reflected in this survey, Helping Hands Respite Care (HHRC) creates opportunities for families in the Lansing area who are taking care of a loved one with a chronic disability or age-related condition to receive respite. Respite is the provision of temporary relief for caregivers and families who are caring for those with disabilities, chronic illnesses, or the elderly. Planned respite time is a vital part of the continuum of family services intended to reduce family stress, support family stability and minimize the need for out-of-home placements. We describe our work in respite as ‘Caring for those, caring for others.’ We believe it is important to help improve the overall quality of life for our program participants and their families. Moreover, our agency helps to address the myth that the individual with the disability or age-related condition is the one who needs the most support. We have found that most times, the caregiver is in desperate need of support or even a break, but does not know how to ask for it without feeling guilty.
February, 2016 was a significant month for Helping Hands Respite Care because we launched the ‘Helping Hands Respite Care: Annual Caregiver Survey.’ This project is important because it promotes communication among the HHRC staff and caregivers and at the same time allows our agency to effectively meet the needs of program participants and their caregivers. As a result, this assessment reminds us that it is important to make agency development decisions based on objective information rather than our own ideas.
The purpose of this assessment was to measure the primary caregiver’s satisfaction as it relates to our organization providing respite, and to provide a way to introduce new respite opportunities such as emergency overnight respite. In comparison, the goal was to arrange a safe space for these individuals to provide feedback to our agency. The Helping Hands Respite Care: Annual Caregiver Survey contained multiple sections for the respondents to read through and provide meaningful and honest responses. These sections included questions about the program participant’s general demographic information, marketing projects, caregiver/care receiver feedback, new agency initiatives, in-home care for children and adults, the adult day services program, and also an overall evaluation.
This survey targeted primary caregivers who receive respite from our agency. Our caregivers mean a lot to us, especially when it comes to non-profit development because they sometimes serve as a connection between our agency and the local area. These families and individuals are also able to see our agency through a different lens than we as employees, interns and volunteers. Therefore, as our organization continues to work on our agency development, we believe that the opinions of our caregivers is very beneficial.
The Helping Hands Respite Care: Annual Caregiver Survey was distributed based on the caregiver’s preferred method of receiving information from our agency. With that being said, participants either received the assessment as a hard copy through the mail or within an email that contained a web link to the satisfaction survey. Upon receiving the survey, each participant was asked to read and answer the questions to the best of their ability and return the survey to our agency by Sunday, February 14, 2016. The implementation of the satisfaction survey is the first time our agency has surveyed each program at the same time. It was also the first time utilizing an online survey service which creates customized surveys.
There were no known risks for participants upon completing this satisfaction survey. As a way to honor the trust between our agency and those individuals that we serve, all survey results have remained confidential and are stored in the HHRC administrative office. Data collected by the participant’s has only been viewed by the HHRC program directors and board members. The names and contact information of those participants who requested additional resources have been sent to individual program directors only.
Findings and Results
Participating in the assessment was completely voluntary. The number of responses received was 19 (27.5%) which was lower than what we hoped for; considering 69 caregivers were invited to participate. It was also noted that not all of the surveys we received were completed. Therefore, the results do not represent all HHRC’s caregivers, only those who responded.
The Helping Hands Respite Care: Annual Caregiver Survey contained a variety of questions including rating scales, multiple choice options and also comment boxes that allowed the caregivers to elaborate on their ideas and thought processes. Of the results we received, we noticed trends within each section of questions.
The general information section of the assessment gave our agency a glimpse of the individuals we serve whether they are the caregiver or care receiver. For example, the responses to our survey were received from spouses and also adult children of agency clients, but the majority of the individuals who returned the survey to our agency were parents of the client. In comparison, these results show that our agency cares for a variety of age groups (the majority) who identify as being male, White/Caucasian, and participate in our programs so that their family can receive time off while they enjoy socialization time with others. Additionally, it was also reported that the care receivers are receiving care for diverse reasons but mostly cognitive or developmental disabilities.
As the survey shifts to the marketing projects our agency has adopted, the results show that although most of the respondents have not seen a copy of our new brochure, they were pleased with our agencies new logo and brand identity. On the other hand, many respondents were not familiar with our friend raising event, “Walk beyond the Barriers” or active on the Helping Hands Respite Care website and Facebook page. In contrast, there was more of a positive response to the e-newsletter because survey participants noted that they receive and read the e-newsletter while others provided contact information to begin receiving the e-newsletter.
HHRC is featured once a month on a local news show, “Morning Blend.” During this time, the executive director and marketing specialist highlight new initiatives and upcoming events for our agency. When asked whether or not the caregiver has seen the monthly Morning Blend features, most responded that they had not seen Morning Blend featuring HHRC. However, a respondent did suggest a new discussion topic to be considered for an upcoming segment, “adults over 50 caring for their disabled children.”
Caregiver/ Care Receiver
The caregiver section was specifically designed to create a safe space for the respondent. For this reason, along with multiple choice options, comment boxes were created for open ended answers. From these results, our agency noticed that most of our responding caregivers are providing unpaid care and assistance to one person and the amount of time this care has taken place is very diverse. For example, one individual reported 18 months and another reported 33 years. Participants were asked to define their role as a caregiver and to also select the life stressors they experience as a caregiver. In the space provided, caregivers explained that being a fulltime caregiver can be very difficult, challenging, and even complex. Some of the life stressors that have come along with being a fulltime caregiver are the inability to take vacations, lack of personal space, and mostly lack of personal time.
Caregivers were then asked to explain what they would change to make their role as a caregiver less stressful. From these responses, individuals reported that increased personal time is needed, more help from family members and friends and these individuals would also appreciate additional in-home respite. All in all, it is apparent that these caregivers understand the importance of respite because when asked ‘what is the biggest benefit of receiving respite?’ the majority stated “time for me to rejuvenate,” “time for me to run errands,” and “time for me to build relationships with family and spouse/partner.” Moreover, the majority of these caregivers said they are pleased with the respite received from HHRC and are interested in learning more about community resources.
HHRC is aware that some program participants are unable to communicate effectively. With that, we used this opportunity to ask the caregiver for insight as it relates to the care receiver’s level of comfort while receiving services from our agency; if noticeable. For example, of those surveyed, the majority of the care receiver’s participate in our In-Home Adult Program and also the Adult Day Services Program. These participants were reported as mostly content and comfortable with the HHRC programming.
Helping Hands Respite Care has been exploring new ways to provide additional respite for the families we serve. With that being said, Helping Hands Respite Care is looking at the feasibility of two new service models- one to implement a new model of in-home respite; and second creating emergency overnight respite services. The new proposed in-home model would involve a CNA or seasoned care provider training a volunteer to provide quality care to an individual client. The proposed emergency overnight respite would be available upon request. When asked if the caregivers would utilize these new initiatives, the majority of responders answered ‘yes’ for both initiatives and also indicated interest in receiving more information. Some of the major concerns the care providers mentioned for both new programs would be the ‘quality of training for the CNA and volunteer’ as well as concerns about the process of ‘paying in advance for the emergency respite.’
Child and Adult In-Home
Some of our caregivers receive respite through the In-Home Child and Adult programs. HHRC caregivers are trained by our agency to work one on one with individuals who prefer to receive respite at home. Overall, those caregivers whose loved ones participate in the In-Home Child and Adult Programs stated that they are satisfied with the services provided and agreed that the HHRC staff members work well with their loved one. When given the opportunity to explain what these caregivers liked most about the In-Home Programs, many said they like the care providers in general because they are well trained and a good match for their family/loved one. On the other hand, when asked what they liked least about the In-Home Programs, two respondents said “turn over in caregivers and lack of caregivers” while another said they would like to receive notifications of staff changes earlier.
Additionally, caregivers who receive In-Home Respite were asked whether or not they would like to schedule a counseling session with our intern/counselor and were also provided space to emphasize what they might discuss with the intern/counselor. The majority of the participants indicated that they are not interested, but those who are interested provided their contact information along with concerns they wanted to address in the counseling session. Some of the concerns were “help with difficult behaviors,” “caregiver stress,” and “an overall understanding of things.” Moreover, trends were noticed throughout this section. For example, when asked whether or not the HHRC staff person was approachable or well trained, two respondents answered “disagree” and the same result was noticed when the caregiver was asked whether or not HHRC’s programs are meeting their current needs. Despite those singled out reviews indicating some dissatisfaction on delivery of service, all of the caregivers surveyed agreed that they would recommend HHRC to another family.
Adult Day Services
Some program participants receive respite through our Adult Day Services (ADS) program in addition to or instead of In-Home Services. In this section of the survey, participants stated that they ‘agree’ when asked whether or not they are satisfied with the ADS Program, if it meets their current needs, and if the staff works well with the program participant. Caregivers were also satisfied with the fact that there is a registered nurse on staff along with the information, suggestions and care provided by the ADS program employees. When asked what the caregiver liked best about the program, one respondent said, “location, the fact that it exists” and another said, “It is close to home. It provides a safe and secure place and stimulation for participant.” However, when asked how the ADS could better serve the caregivers needs, one participant said, “Evening program from 6:30-9:30pm” and another said, “more one-on- one teachings for people with dementia.” Lastly, all respondents agreed that they would recommend the ADS program to another family.
As The Helping Hands Respite Care: Caregiver Survey concluded, we took time to reintroduce our Free Fun Events along with two other programs, Breaking Barriers Today (BBT) and The Respite House and lastly to receive an overall evaluation. For example, when asked how likely the participants are to attend a Free Fun Event with our agency, the results were divided between “very likely,” “slightly likely”, and also “not at all likely.”
The evaluation questions for BBT and the Respite House were followed by a comment box so that the caregiver could write their own response. When asked to share thoughts about the BBT Program, one respondent said, “the supervisor is receptive to any schedule changes. Flexible!” and another said, “things have really improved since the beginning. The new location and system seem to be working well now.” At the same time, when asked for feedback about the Respite House, one participant said, “I love it,” and another suggested out sourcing this facility. As survey participants gave their final thoughts, a few individuals thanked us for our work while another noted changes within the agency’s culture in comparison to past years and also gave suggestions to create a space for families to get involved more through a family advisory board.
After collectively reviewing the survey and feedback from the participating caregivers, following is a short list for consideration for areas to improve the survey process and results for next year’s distribution.
– It is always in the best interest of our agency to work on improving satisfaction numbers. This can be done first within each program and then overall as an agency.
– It was reported that there was a hiccup with the online survey function which we regret and can easily improve in future surveys. (ex. Some participants preferred to click more than one answer to effectively respond to a question but could not.)
– Some participants did not complete the survey entirely- Perhaps 83 questions felt a bit overwhelming. For future surveys we may explore sending specific sections of the survey to specific caregivers. (ex. John Smith attends the ADS program, so his caregiver will only receive questions pertaining to HHRC and ADS).
Resources for Caregivers
Many of the caregivers asked for more community resources as well as additional respite time. Although the contact information has been sent to each program director regarding the questions/concerns our caregivers have, it may be beneficial to send an overall update to the caregivers on progress that our agency has made. This progress could be sent via e-newsletter or by mail.
If caregivers have more questions or concerns, it is recommended that you please contact or visit our administrative office and speak with the program directors.
As stated above, the purpose of The Helping Hands Respite Care: Caregiver Survey was to assess the primary caregiver’s satisfaction as it relates to our organization providing respite. In doing so, it was important to our agency that we provide a safe space for caregivers to voice their opinions in a nonjudgmental way. It is our goal to always provide quality care and respite for the families we serve as it relates to our mission. What that, we thank you for your participation and informing our agency of ways we can continue, Caring for those, Caring for others.
Helping Hands Respite Care Staff This analysis was prepared by: Jackie Gibson, MSW (effective 5/6/16)
Dotty’s Ten Tips for Communicating with a Person Living with Dementia
Here are ten tips you can use to improve your life and the life of an individual living with dementia.
1. You know what makes me feel safe, secure, and happy? A smile.
2. Did you ever consider this? When you get tense and uptight it makes me feel tense and uptight.
3. Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around.
4. Please try to understand and remember it is my short term memory, my right now memory, that is gone. Don’t talk so fast, or use so many words.
5. You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of Castor oil. So I’ll just say No to be safe.
6. Slow down. And don’t sneak up on me and start talking. Did I tell you I like smiles?
7. Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don’t have my attention, or confuse me? I am going to say No – count on it.
8. My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nice smile always gets my attention. Did I mention that before?
9. Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don’t come back and tell me you are sorry, I won’t know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think.
10. You talk too much, instead try taking my hand and leading the way. I need a guide not a person to nag me all the time.
Question: What Do Student Athletes and Respite Caregivers Have in Common?
Many of Helping Hands Respite caregivers are college students with plenty of heart and conviction. They may have a special interest in working in our care environments, the operative word here being care; they may be drawn to working within a family environment to care for a child with disabilities because they are students in special education, nursing, or social work. Or, perhaps their area of study focuses on gerontology or adults with disabilities. One such student and caregiver is Kelsey Kuiper, a senior at Michigan State University about to graduate and get her first placement as a student teacher in a special education classroom.
Kelsey is a student athlete who, in most cases, does a great job of juggling work responsibilities with studies and athletics. She came to Helping Hands Respite Care in the summer of 2014 on the recommendation of a roommate who already was employed by Helping Hands. Within a short period of time Kelsey was working in several different homes. The children learned to trust her and would respond well to her directions and care. “In my special education classes we learn how to teach the child but not how to care for the child,” shared Kelsey. “I remember calling my Mom after my first couple of days of working with the kids, I felt so raw and was convinced that I was no good at this; but little by little I began to understand how to care for the child who was my responsibility and how to build a bond of trust.”
It didn’t take long for Kelsey to become a valued and reliable caregiver for Helping Hands Respite Care. Unfortunately, Coach Suzy Merchant was having a bad run of luck with injuries and transfers on her MSU Women’s Basketball team. While, Kelsey’s main sports were Volleyball and Track, her height and athleticism made her a great candidate to strengthen the MSU Women’s Basketball team. Agreeing to play for Coach Merchant meant Kelsey had to stop working for Helping Hands. “On the bus ride back from our last game, I texted the scheduler at Helping Hands to let her know I was ready to come back to work,” said Kelsey. “Once I came to work at Helping Hands my experiences here confirmed my decision to be a special education teacher. Learning to care is at the heart of the teacher/child relationship and I will not forget that.”
Understanding the Value of Respite Care
One thing that Kelsey was not clear on was what her service would mean to the families. When asked about her understanding of the value of respite care she candidly replied that she really didn’t know what respite meant until she “Googled” it. “Now, I hope that what I am doing is also helping the families. It is great to see that look of happiness and relief on the parent’s face when I arrive for my shift.”
In August of 2015 we will be saying goodbye when Kelsey heads to her first student teaching assignment. We will be thankful for the time that she was able to give to the families we serve, and very sorry to see her go.
Learn more about what Helping Hands Respite Care is doing to extend the length of care provider service to help the families we serve.