MSU Grant Focus on Caregivers 

MSU logo represents MSU grant focus on caregivers

 

For the past six months Executive Director, John Stauffer, has been serving as a contributor to an MSU Grant Focus on Caregivers, an important alliance for Helping Hands Respite Care. Called the IMPART Alliance, the group was formed to provide critical and anecdotal information for a $500,000 MSU Research Grant process targeting “personal care attendants, or PCAs,” in our vernacular – caregivers. The grant came from the Michigan Health Endowment Fund in the category of Special Projects and Emerging Ideas Grants. Written by MSU professor Clare Luz in the Department of Family Medicine, the grant outlines a program called Integrated Model for Personal Assistant Research Training (IMPART).Clare Luz, author of MSU Grant Focus on Caregivers

Focus of  MSU Grant About Funding for Training and Service

Major topics being explored through this grant include:
– Creative Ways to Finance PCA Training and Workforce Development
– Exploring Diverse Sources of Funds to Pay for Training and Service for PCAs

 

Background for this initiative began 6 to 7 years ago with a federal grant that was offered in several states to focus on standardized training for PCAs. The acronym for the program was BTBQ which stood for Better Training, Better Quality. Contrary to most of the participating states in this program, in Michigan the BTBQ training never made it to the implementation phase before the funding ran out.
In Michigan, the reason for the evaporation of funding is because unlike the other participating states, Michigan is a state which does not license many of the care facilities/organizations and as such has no uniform training standards across the state.

In this generation of focus on the training, the IMPART alliance proposes going back to the other states to gather lessons learned from their implementation strategies to inform the research goals going forward in Michigan.

Across the country there is a consensus that there is no way forward in an environment where PCAs being paid at minimum wage creates an effective response for the ever-growing need for Personal Care Attendants. As the Executive Director of a program widely recognized as providing top-shelf training, John Stauffer’s role in the committee is to be a strong voice for the methods of training which are relevant to the target audience and appropriately reflects the reality of training for a new generation of caregivers which includes more and more college-age caregivers.

Legislators Recognize Value of Respite with Action – Consult with IMPART Committee of MSU Grant Focus on Caregivers

The IMPART alliance includes a sub-committee, which John Stauffer also serves on, which is focused on future implementation and needed wage increases across the board. And, currently this sub-committee includes several members who were responsible for input on some new state legislation targeted at immediately raising wages for PCA’s. The conversation began with legislators and lobbyists proposing a $2 an hour wage increase for these care attendants. The proposal was ultimately reduced to $.50 an hour, for budget reasons, and specifically targeted to those providing care for Michigan Community Mental Health (CMH) programs supporting respite care for families with members needing care due to cognitive/physical disabilities.

State Legislation Passed Will Positively Impact Some PCA/Caregivers

The $.50 increase for PCA’s caring for individuals supported by CMH went into effect October 1st. At Helping Hands Respite Care approximately 45% of those we care for draw some funds from CMH. Because Helping Hands Respite Care has a broad mission of caring for individuals from the very young to the oldest, the remainder of our programs may draw funds from Tri-County Office on Aging for our senior programs, the Veteran’s Administration and their benefits for respite care for spouses of those who have been in-service to our nation, and finally families privately paying or using long-term care insurance policies. “The diversity of our service and programs means that there will be some caregivers/PCA’s who will not see an increase in their pay,” commented Stauffer.

Minimum Wage Increase Coming January 2018

“However, there has been preparation for addressing a broader increase across more of our care staff with the coming of a $.35 increase in minimum wage in Michigan beginning January 1st. Current care staff should watch for a letter which outlines how these two increases – the CMH wage increase and the minimum wage increase will be reflected in their paychecks. It should be noted that the language of the CMH wage increase provides the $.50 per hour increase to go both to the direct care agency and the care providers. At Helping Hands Respite Care we prioritize the well-being of the families we serve by making sure that all of the increased funds go directly to caregivers,” concluded Stauffer.

 

BBT Program Move from Gier Center to Beekman Center

Program Move - BBT will be at the Beekman Center instead of the Gier Community Center

Announcing Program Move: The Breaking Barriers Today (BBT) program is moving from Gier Community Center back to the Beekman Center. Effective 9/1/17, the transition of the Breaking Barriers Today program will be complete. We are sad to lose access to such a wonderful facility at Gier. Unfortunately, we simply could not see the path towards growing the program to serve more of the families with an adult child aging-out of the school district sponsored programs.  Although the need is there, the perception of this program as competition rather than an alternate option conspired against getting the expected referrals to grow the program.

The bright side is that the proximity to the Beekman Center and Heartwood School students/families should yield more referrals into our modified Breaking Barriers Today program and the Respite House weekend respite program. Going forward the Breaking Barriers Today program will primarily be an after school program.

With new leadership (read about new supervisor) and enthusiasm for our re-defined BBT program we have great hopes for growth in this program.

Kevin Bush – New BBT Supervisor

Kevin Bush, new BBT Supervisor

Meet Kevin Bush Who Changed Jobs as a Child Advocate to Supervise the BBT Program

We are thrilled to have Kevin Bush join our administrative team.  Kevin graduated from Michigan State University with a Bachelors in Psychology. He recently worked at St. Vincent Catholic Charities as a Child Advocate it its Children’s Home program.  The children in residence at the Children’s Home are in the Foster Care system and came to the program with high needs for emotional healing.  Kevin’s gentle but firm manner combined with his educational experience make him a highly prized employee.

“We are blessed to have Kevin join our team and look forward to the imprint he will have on the Breaking Barriers Today program as supervisor, and his Team Lead position for the Respite House program,” shared Executive Director John Stauffer.

“I have a passion for leading and taking care of people who are vulnerable and may need encouragement to grow and learn, “shared Kevin. “This choice to help children came out of a college intern experience where I worked one-on-one with a child in an Adolescent Diversion Program. I found the close contact meaningful and it was a real boost to see progress.  I am excited to get started at Helping Hands Respite Care because I feel like I will have the opportunity to know and feel the effects of making a difference in the lives of the children in our care.”

Newly married, Kevin and his wife Stephanie are enjoying making a life in a home on the west side of Lansing in a rural setting close to the Woldumar Nature Center.

Nancy Hall – My Respite Care Story

My Respite Story features Nancy Hall and her son JimmyMom, Nancy Hall, Shares My Respite Care Story

Being the parent of a special needs child is not easy. You find you have an abundance of patience you never knew you had, a voice that can be loud when advocating for your child since he cannot speak for himself, and strength and stamina as caring for a special needs child can be quite exhausting at times. But there are also many rewards. You will never look at life the same way again and learn to appreciate even the smallest accomplishments. Just seeing Jimmy happy and content is all I need.

I love my “Jimmers,” as I call him, and while he is not verbal he certainly knows how to make his needs known. When he is happy he will clap his hands, and tap his feet on the floor. I call those his “Happy Feet.” When I hear him “OOOING” I know all is good in his world. When Jimmy does not want to do something, he squawks at me. A good example is when I make him brush his teeth. He gets over being mad quickly though.

When Jimmy was 3 years old we knew that he would need specialized care. That is when we enrolled him in the Beekman Center, one of the few options in this area for children like Jimmy. Even though this was the right choice for him, putting him on the bus for the first time was so hard. I know I cried all the way to work that day and cried one and off most of the day. He just seemed so little and the bus seemed so big! Jimmy was so little and vulnerable. I felt like I was sending him off to strangers but I knew he would be in good hands.

The program at Beekman was helpful but we needed to cover the care gap after school. It was essential that my husband and I be able to work, both for financial reasons and for personal social reasons. I enjoy getting out and going to work and need that adult interaction. I have made many special friendships over the years with the people I work with.

At first, we turned to after school care in a private home. That was until the day I came to pick up Jimmy and he was crying which was very unusual for him. My mother’s intuition told me something was just not right. Not long after that Jimmy slipped out of the yard through an unlocked gate, something he had never done before. My heart sank! All I could think of was the “what ifs” that could have happened. Jimmy is defenseless and cannot fight back. He could easily be taken advantage of. I knew a change had to be made and went searching for a better solution. That was 20 years ago when we came to trust the organization then known as Lap Respite Center, now Helping Hands Respite Care.
In that time Jimmy has been well cared for over the years in various versions of the after school program. Having Helping Hands Respite care as part of our team has been an important part of Jimmy’s overall care plan. It is hard to explain the peace and confidence I feel being able to go to work knowing that Jimmy is in good hands and is in a safe and loving environment. It also brings me comfort that the staff at Helping Hands is fully trained to meet Jimmy’s individual needs.

Not too long ago Jimmy turned 26 and aged out of the Beekman Center program. The after school program, called Breaking Barriers Today, located at the Gier Community Center, has been a great environment for Jimmy. Jimmy loves it there! The staff has also been resourceful and worked very hard to accommodate our need for more care. The alternative would be having Jimmy at home and even though he would receive good in home care, there would not be enough stimulation and interaction like he receives at the Breaking Barriers program. He needs structure and a routine and so do I.

My husband and I are so grateful for the care and support we get from Helping Hands Respite Care. I know Jimmy is at the right place as I pull into the parking lot at Gier and I hear his “Happy Feet” tapping away in the back seat. It is music to my ears! I honestly do not know what we would have done without their help over the years.

And the respite is not only for Jimmy, but for my husband and I too. Sometimes we will take a day off work and just enjoy what we want to do while Jimmy is being cared for. It may seem like a small thing to most but it is vital for our well-being.
Our hope for the future is that Jimmy’s care will continue with Helping Hands. It has always been our goal to keep Jimmy living at home with us and Helping Hands Respite Care is helping us achieve that goal. We feel so blessed to have Helping Hands Respite Care as a huge part of our lives now and hopefully for years to come.

Why We Made the Switch to Clear Care

Caregiver has more time to care when she uses the Clear Care system for reporting

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.Clear Care logo

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.

BBT Program Needs Referrals

Photo demonstrates the program needs referrals to maintain a care ratio as designed.

Wonder why the BBT program needs referrals? While we are pleased to see the increase in participants in the Breaking Barriers Today program, you should know that when this new program was started in 2015 it was designed to be a blended program to serve individuals with varying levels of capability and function. We are challenged with the reality that our numbers of participants with higher ability levels is not keeping pace with our goals.

This is something that we hope our families may be able to help with by passing the word within your circles about the great opportunities that this program offers, particularly for our higher functioning participants.

Here is a list of benefits:
1. Straight up value based on cost and programming.

2. Higher functioning participants get a boost in self-esteem by
taking the opportunity to be a teacher and role model for others.

3. The Gier Community Center and all of its programming capacity
provides rich opportunities for community immersion for BBT program
attendees. One of the key opportunities that this program offers is the
chance to interact and play with other kids attending the community center.

4. For those who have aged-out of regular school, the BBT offers quality time
through active programming such as arts and crafts, games, and physical activity.

5. The relationship with the City of Lansing through the Gier Community Center also affords us the ability to have BBT participants attend special outings at no additional costs, plus free transportation.

6. The BBT program has also attracted volunteers from the Occupational Therapy
Program at Baker College, Recreational Therapist from Grand Valley State, as well as staff caregivers from MSU – students enrolled in relevant areas of study like Nursing, Kinesiology, Social Work, and Psychology.

If we are able to make headway with increasing the number of participants in a way that supports our blended program goals, we will be able to continue to offer programming pricing based on our original plan. Our goal is to see good progress by adding at least four new participants by the end of the summer. If not, we will be forced to redesign the program and pricing.

The Breaking Barriers Today program was designed to support families with after-school and all day needs for care of loved ones with physical and/or cognitive impairments with diagnosis such as autism spectrum disorders, downs syndrome, cerebral palsy, and multiple sclerosis.

You can help with our  need for program referrals by sharing leads of families you know who might have care needs that the Breaking Barriers Today program can meet. Please send that information directly to BBT Program Supervisor, Kathryn Green at BBTSupervisor@helpinghandsrespite.care 517 – 372-6671 ext 106.

Breaking Barriers Today – Summer Plans

We are gearing up for a busy summer filled with activities at BBT. We have a great team of helping interns and volunteers ready to help a teen or young adult get the most out of summer packed with new activities and special field trips. Learn More or email BBT Supervisor – Kathryn Green.

Because the Breaking Barriers Today program is located at the Gier Community Center we have the ability to take advantage of not only a tremendous facility which gives us lots of room to get active, but also to participate in programs and outings planned by the City Parks and Recreation Director. It is wonderful to have the opportunity to merge our program participants into programs which may include neuro-typical children. Ask your case manager how your child can participate and whether the care plan could be expanded to include time at the Breaking Barriers Today program.

So often we see teens or young adults with a disability languishing in front of a television or feeling a growing sense of isolation. What a difference we can make in their day by having the access and resources to clear a path for them to experience exciting new things.

We have a team of soon-to-graduate Occupational Therapists from Baker Community College who have pledge a significant amount of time to the Breaking Barriers program this summer. More volunteers are also committing time to make participating in a special outing or event a reality.

If you know someone that is searching for something meaningful to do this summer, we would be pleased to have them participate as a volunteer at Breaking Barriers Today. The application process is straightforward and easy to complete. Download a volunteer packet today!

Spring Is Almost Here at BBT

Program Move - BBT will be at the Beekman Center instead of the Gier Community Center

Participant and Care Provider enjoying early spring at BBT

 

This past week has been awesome at Breaking Barriers Today (BBT) because the weather has been so nice and we’ve been able to really appreciate it. Everyone has been able to go outside and enjoy the sunshine with their friends and care providers. We are all ready for spring to arrive because we can have even more time outdoors!

This past month we have had plenty of staff and volunteers making it easier for us to utilize all of the space available to us a whole lot more. This has been a real benefit for everyone because we are able to do so many different activities. We have themed lesson plans for every week which has been fun because we get to plan a lot of games and art projects around the theme. The lesson plans keep us on schedule so things run smoother and all of the participants can get the most out of their day.

Spring activities at BBT includes the After School Mileage ClubA new exciting thing that happened this past month was being able to join the Gier After-School Program for their Mileage Club. This is so significant because our participants get to spend time with all of the kids that come to Gier after school. For the Mileage Club we help set up the cones in the gym and then we turn on some music and all walk (and roll) together. Everyone seems to really enjoy it!

Our Numbers Are Growing this Spring

BBT is continuing to grow in numbers of participants, and we expect our volunteer count to grow as well. Recently some students from the MSU Fraternity, Pi Kappa Phi, have shown interest in coming to help out at BBT. They have 70 brothers in their fraternity, and would have some of these brothers volunteering and spending time with us at Breaking Barriers Today. Pi Kappa Phi is a fraternity that has a close relationship with Helping Hands Respite Care and volunteering is just another way to bring them closer.

We are also starting to work on summer planning so we can have BBT and the Gier Summer Kids Camp enmeshed as much as possible. This summer is going to be a lot of fun and full of special activities so we will keep you updated on the planning once it gets farther along. Also, just a reminder to our families that Spring Break is coming quick, April 4th – 8th, so please keep us posted on your needs so we can schedule staff appropriately.

The Survey Results Are In!

Helping Hands Respite Care: Annual Caregiver Survey

In follow up to our recent caregiver satisfaction survey, below is an analysis of the results.

 

Helping Hands Respite Care: Caregiver Satisfaction Survey
Helping Hands Respite Care has been working to promote communication among HHRC staff and caregivers

Survey Introduction
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.

Sample Selection
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.

Distribution Process
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.

Confidentiality Concerns
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.

General Information

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.

Marketing

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.

New Initiatives

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.

Overall Evaluation

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.

Recommendations
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.

Thank You
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.

Thank you,
Helping Hands Respite Care Staff
This analysis was prepared by:
Jackie Gibson, MSW (effective 5/6/16)

Breaking Barriers Today (BBT) – Achieving Milestones

BBT participant Jimmy enjoying a book.

What a wonderful start we have had for 2016! Over the past few months we have been working on more goals for our clients and watching as they are achieving milestones. Now we are looking into creating job task schedules based on ability level to help your loved one continue to work on independent living skills; and getting ready for more community inclusion time as spring arrives. Our goal is to help them engage in activities for learning, socialization, and work on stimulation so they can grow as individuals.

Everyday each of your loved ones surprise us with their ability to learn and grow. Though there were many, there are a few specific achievements that were reached this month that we’d love to share with you:

Jimmy has been reading a lot of books this month. He enjoys looking at the pictures and flipping through the pages, and, when he’s done he puts the book right back where he got it.

Lucy has been starting to do hand over hand feeding. She has been guiding the care providers hand to her mouth to eat, which is awesome.

Bethany and care provider Ally did some beautiful hand over hand drawing this past week. Bethany loved it and smiled the whole time.

These are just some of the milestones we have witnessed this month and as we move forward day by day, month by month, we expect to continue to see more.

All of us at BBT want to give a shout out to Sarah who is having a birthday this month and has been a long term participant of the After School Program and BBT. Thank you Sarah for being part of the group and we hope you have a wonderful birthday! Our care providers deserve a shout out for the awesome work and the flexibility they’ve had as we continue to improve our BBT Program.

A huge thank you goes to the parents who have filled out the survey regarding BBT, your voice is important. Thank you for trusting us with your loved one and being willing to share your thoughts with us.

Welcome to Michael and Mariah as they join the BBT family next week! Here we grow.

For more information about The Breaking Barriers Today Program, please contact the program supervisor, Elizabeth Krumm, aspsupervisor@helpinghandsrespite.care