I have hope. Hope that this DD Task Force will be able to accomplish something that the previous 38 or so before were not able to accomplish – namely revamp the system so that there are services for those in need before they get to the crisis state.
We need to think of new ideas that will serve our community members and stop blaming others for taking “more than their share.” In order to do this though, we need to allow people to have their voices and concerns heard – even if they do not agree with our opinions. We cannot shut out people who have something new or different to offer. We need to stop the rhetoric. I think we can do this.
As an advocate for a continuum of care, I do not advocate for one type of care over another but advocate that each person is seen as an individual and they are supported according to their needs. That’s what I care about and in order to achieve that, we need a continuum of care services.
In thinking of innovative ways to better serve those in the community, I have come up with the “Respite Revamp” model. I have introduced this previously but have just written to the DD Task Force today with the explanation of why a respite system like this will work better than the current system. I believe that if more people had stable, reliable and sustainable respite, we would not see as much crisis oriented care.
Below is my letter to the DD Task Force – I hope that this idea is considered.
September 8, 2012
Dear DD Task Force,
As a parent who has survived crisis I would like to give you an idea of a program which I believe would be greatly beneficial to those in the community. This type of program would help families and alleviate some of the crisis situations by providing a service in a new way. I refer to this as “Respite Revamp” and I believe that it will not only serve families better but would be a more cost effective system for DDD with respite service.
The problem is lack of availability and lack of consistency with in-home respite providers. Our family and many others who utilized these services (may include Medicaid Personal Care providers too) have experienced similar problems. Many times the provider did not show up when scheduled, would show up but be physically or emotionally unable to do the job, not available on a consistent time or schedule and basically not reliable.
I will describe our situation but our situation is not unique. Our family was lucky in that I was able to work part time as a registered nurse in the evening shift and my husband, who is a professor, was able to be flexible enough with his schedule so that there was always one of us available to care for our son. This worked great until our son started Middle School and he got home from school before my husband could get home from work. This is when we started to have many problems with the caregiver – be it Medicaid personal care or respite – they were the same people in our minds.
Given the low pay of these providers many have two jobs. Many of these caregivers also work in the school districts. This issue was a huge problem for us since the time we needed care was right after school and few caregivers were available. This necessitated me even decreasing my work hours more so that our son could be cared for.
Caregivers calling in sick or late at the last minute caused more problems that I can think about. We would schedule our lives around the times that we had a caregiver. This meant doctor’s appointments, events with our other children and work. When a caregiver did not show up it would cause havoc in our lives. Not only would our son be traumatized by this which necessitated us working through his behavior issues due to change of schedules but caused many problems with the hospital where I worked (hospitals – particularly critical care areas with specialty nurses such as the unit I worked on– do not appreciate last minute calls from staff saying they cannot work that shift), last minute cancellations of important appointments and missed opportunities for us to participate in events of our other children.
This was not only a problem with independent providers but with agencies too. When working with an agency which was supposed to ensure our son had consistency in caregivers, they would only schedule one week at a time (how does one then plan other appointments when they could not schedule more than a week out) and then they started sending caregivers who had not been oriented to our son without giving us prior notice. When this occurred, there was no way that I could leave to go to work or the appointment that I needed to attend since it would not be safe to leave them here.
The most reliable and best service that was the most beneficial to us were programs that Seattle Parks and Recreation Specialized programs held. These were programs were reliable, planned and the staff was consistent. With group settings and programs that had staff backup, the stable, sustainable respite we received was lifesaving. What was even better though was that our son was able to attend many community events which we could have never taken him too. With this program we could plan events with our other children and know that Thomas would be cared for safely. I cannot speak highly enough of this program – both the Saturday Activities Program and the Day Camp Program.
It is from thinking about this program that I believe the “Respite Revamp” may work. If DDD could run some consistent day or evening programs in community centers rather than rely only on independent caregivers in homes, many more could benefit from this type of respite.
If there was group respite, the providers could be paid higher wages which hopefully would also help with stable, sustainable staff and consistency. There would be staff back up so one person calling in sick would not cause the respite to be cancelled. Families could plan around this time and feel it would be reliable. This may be just enough to alleviate many crisis situations.
I truly believe that if a program such as this had been in place when my son was in Middle School and High School, our lives would have not been crisis driven, our son would still be at home and I would not have a permanent disability. It’s too late for our family but it’s not too late for others who could greatly benefit from a program such as this.
Please consider programs such as this in thinking about systems to maximize the services we have and to reach those without services. This would be a very cost effective and beneficial service.
Cheryl Felak, RN, BSN