Do You Need A Caregiver?

I and many others are well aware of the crisis that we have regarding lack of trained, qualified and committed caregivers for our community members in need.

Being aware of this crisis, I would think that the Department of Social and Health Services would want to work with their clients and independent providers to provide flexibility and alternatives so that the providers are able to complete the training.

In Washington State, independent providers can be hired by the disabled person and after having completed the 5-hour “Orientation and Safety” class, background check and fingerprints, may begin working.  They have 120 days to complete the remaining 70 hours of the Basic Training and need to have their Home Care Aide Credential within 200 days of starting to provide care.

While this may not sound difficult, in reality, many people are finding it impossible to complete for several reasons.

  1.  While working and providing care for the disabled person, the IP is also expected to travel to the SEIU training sites to attend the required evening classes.  For a person who provides care in the evening, this task is virtually impossible once caregiving duties have started.
  2. There is no “exception to rule” or extension available if unusual circumstances come up – such as family crisis, relocation, availability,  change in status.  DSHS has no flexibility for accommodations for IPs to get their training. 
  3. Even though there are alternative courses available through other DSHS approved training sites, IPs are not informed of these choices – even if they have difficulties with attending or completing the Training Partnership classes.

 

In order to be independent and involved in her community, Sarah needs to have reliable caregivers.  Sarah is able to self-direct but does need the caregiver to provide physical and personal care. Sarah had a terrific and experienced caregiver.  The restrictions of completing the 75 hour SEIU 775 training within 120 days of starting work has proven to be too restrictive for many people who have applied.

register through SEIU 775 site

This is the checklist from DSHS on steps to becoming an HCA – note that the ONLY training course information provided is the SEIU 775 training and a link to the SEIU 775 website.

The caregiver, having graduated from PIMA Medical Institute and having worked in an Internal Medicine Clinic as a Medical Assistant for 4 years in addition to having the experience of caring for her profoundly disabled younger brother, it seemed that she would fit into one of the categories that do not need to complete the full 75 hours SEIU 775 training by the criteria of “similar training”.

Unfortunately, a medical Assistant is not one of the jobs with “similar training” that is exempt from the 75 hours.  The caregiver decided that taking a Nursing Assistant  Course and becoming a Nursing Assistant – Certified (NAC). would be the best option for her.

This is where the whole issue gets more and more confusing and ridiculous when one just wants to do their job and provide appropriate and safe care to her employee.

DSHS sent a letter informing her that she would not be paid after 120 days due to not completing the SEIU 775 Training within that time frame.  DSHS sent the letter to an old address (even though they had been using her current address for not only her W-2 but other correspondence between the case manager and SEIU 775).  Due to this error on the part of DSHS, the caregiver did not receive the notice until the time limit to send an appeal had expired.  The caregiver had already taken steps before the deadline to become an NAC.

  1. January 18, 2018 – Application sent to Department of Health for Nursing Assistant Certification
  2. February 26, 2018 – appeal letter sent in to DSHS from caregiver regarding notice that she would no longer be paid since she had not completed the SEIU 775 training.
  3. March 13, 2018 – caregiver had discussion with the credentialing specialist at DOH who provided extremely useful information with some options available to gain certification.   She provided information  on the pending NAC if that was still a consideration.  (See note below) The information on the website was not totally correct with the processes and testing needed to complete the bridge program from MA to NAC and this lack of information was a barrier to completing this training.

Your Pending Nursing Assistant Certified (NAC) will stay pending for 300 days. At that time, you will be sent a 30 day warning letter. That gives you 30 days to respond letting us know if you would like to keep your NAC open. All you need to do is simply respond to that letter via email or by phone and we will extend it another 300 days. There is no limit to how many times you can extend it out as far as I know. This will keep your already submitted $65 payment and NAC application applicable to completing the NAC application process at a later date if you would like.

There is also a 24 hour bridge training program you can take after you have an Active Home Care Aide license as well. If you would like to pursue your Home Care Aide license for now and complete the NAC application process at a later date via bridge training, you would need to submit the following: (You’ve already submitted the application and $65 payment)

4.  April 9, 2018 – DSHS filed a Motion to Dismiss  claiming the caregiver had no right to appeal. A hearing was heard with the judge and the Department Administrative Hearing Coordinator – Mr. Korff.

5.  April 19, 2018 A pre-hearing appointment with the Judge and Department Administrative Hearing Coordinatore was set for

  • “Mr. Korff stated at the motion hearing April 9, 2018 that the Department first learned of my change of address on March 1, 2018 when they received my request for an appeal. I believe that the evidence I have provided indicates that the Department had my current and correct address on record as I was receiving mail and payments from November 2017.  I did my part and updated my address with the case manager and evidently there was a break in the system after that”

  • “I was working for free from January 26, 2018 and am currently still working for free for Sarah due to the fact that there are so few providers that are able to work and I do not want to leave Sarah without the needed care. My plan was to complete the certification for a CNA as soon as I could and then submit the license to DSHS and resume being paid for the care I provided.”

  • “I had sent in my appeal to the Office of Administrative Hearings with the hope of being able to extend my temporary status and complete the HCA training. My concerns I raised are appropriate and I believed that common sense and possibly an exemption to the rule could be used to enable me to continue the HCA training (at my own expense) and also be paid to provide care to Sarah”

  • “It has been clear by my actions that I have been attempting to accomplish training and complete the required steps in order to have a HCA credential and be paid for care-giving. It has been through a series of unfortunately timed events that I was unable to complete the steps in the required time set by the Department.”

  • “Things are again stalled due to the Department refusing to allow me to have an appeal and instead changing the hearing to a “prehearing conference”. There is still no decision on the part of the Department.”

  • Below are the actions that I am requesting:

    • I receive payment for the two weeks I worked in January, 2018 that I was unable to document due to being locked out of the IPOne system. (Allow me access to the system so that I can update it and submit my hours)

    • I would like an exemption to the rule of 30 days to appeal and to extend the temporary contract.  I would like an extension of 60 days which will give me time to complete all the required training for the HCA.

    • I would appreciate being paid for the time going forward while I complete my training (at my own expense) and continue to provide the caregiving that Sarah requires. I plan to have my HCA training completed within 60 days from now.  I would greatly welcome the opportunity to continue working for Sarah during this time but I also need to be paid for my work.

6. April 26, 2018 – Mr Korff objected to each of the 9 documents that appellant submitted regarding the Motion to Dismiss  on the grounds of relevance – stating all were irrelevant.

7. May 7, 2018 – Order Denying  Department  Motion to Dismiss issued –  Judge found the appellant’s request for an appeal hearing was timely.

8.  May 8, 2018, Caregiver submitted HCA Application to DOH  choosing to complete the HCA training at a DSHS approved training site rather than the NAC since it would be quicker at this point to complete and get the certification.

9. June 13, 2018 – Administrative Court Hearing with Judge and Department Administrative Hearing Coordinator, Mr. Korff.   Mr. Korff again stated that there were no other options to take the HCA training and that SEIU 775 was the only course available.

10. June 28, 2018 – Caregiver submitted documents to the Judge regarding appeal and request for extension as an exception to the rule together with  information from DSHS regarding alternative training available which the Department Administrative Hearing Coordinator denied existed.

 

To be continued –

 

Senate Health Committee Hears Bill which looks to close ICF/IDD

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans  to consolidate  from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling.  This is  not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility.  Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID?  The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus.  Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports.  These wages and supports need to be appropriately funded to provide the services.  This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

Thank you, Alpha Supported Living

This past year has seen great changes for my son and this past Thanksgiving, I realized how much growth my son has made since last Thanksgiving.

Last year, our son, age 21, had lived at the Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID) for 5 years.  The ICF/ID was only 10 minutes from our family home and part of the community in which our son was born and raised.  We had frequent contact, outings and visits both at our home and his.  Unfortunately the team at the ICF/ID was unable to manage my son’s healthcare and daily support needs but we didn’t think we had another option.

I remember not only the great sense of relief I had when I took him back home after our Thanksgiving Dinner last year but also grief and sadness about his increased agitation and manic behavior which was so disruptive.  I questioned if we would be able to have him visit for future family holiday celebrations. He had been experiencing increasing mania and the physicians at the ICF/ID refused to follow the recommendations of our son’s psychiatrist regarding medications to control his mania.  I remember expressing my great concern regarding his increasing mania  to the psychiatrist during our meeting last December and feeling powerless in getting the needed medications prescribed and administered.

This Thanksgiving, our son was a totally different person.  He was at our family home for at least 4 hours and stayed focused and helpful.  His participation in meal prep and tasks was amazing.  He even sat at the table and ate a nice sized meal.  When it was time for me to take him back to his house, I realized that he had set a record for length of time at our house and that I was not totally exhausted and spent from trying to manage his mania, other disruptive behaviors and physical care.

I attribute these great changes to the move he made last spring from the ICF/ID to a supported living arrangement in a home with 2 housemates.  This was made possible by the Roads to Community Living Grant and Alpha Supported Living Agency in being able to provide these great services.  My son has greatly benefited in so many ways and in such a short time.

Within two months of moving and having his care provided by Alpha Supported Living, our son’s health issues were treated appropriately, medications and treatments administered as prescribed and other long standing health issues were addressed and managed.  It was great to see these changes and work with this team to create solutions that worked.   But the improvement and stabilization of my son’s health issues are just the beginning of the changes we have noticed.

Our son is learning new skills and is supported to increase his ability to make choices and take responsibility for various aspects of his daily life tasks.  He is now able to wash his hands, sit at the table and eat a whole meal, clean up his dishes, go grocery shopping for his own groceries, and is very compliant with taking his medications and other responsibilities such as ensuring his iPad is plugged in at night and putting his glasses on his dresser before going to bed. He is able to follow verbal prompts better and stay on task a few seconds longer.  He is becoming more self-directed in being able to communicate his needs and desires.

We are beyond proud of the accomplishments he has made this past year with the support from Alpha Supported Living.  Seeing first hand what a difference this care makes it is imperative for our states to support the wages of the caregivers.  We need continuity of care – both as the recipient of the care and as the caregiver – to continue to provide this care.

Some supported care agencies are experiencing staff turnover rates of 50-70%.  This is not only very disruptive to the clients but increases the overall cost of care when one looks at the cost of recruiting and training a revolving door of caregivers.  Once trained and placed in a job many direct care staff leave due to the intensity of the job and low pay. The state sets the pay rates and it is just not enough to cover costs of the direct care staff.

Supported living is in crisis.  Funding for direct care staff has been ignored for years while costs have continued to increase.  The level of intensity of staff support is increasing and we need to provide the appropriate staff.  This level of care is critical to many in our community to enable them to have a meaningful life experience.

A meaningful life is more than just having support staff in your home though.  It is being able to go out and be in the community.  Many agencies do not have funds to provide transportation or staff for outings, activities and medical appointments.  Many agencies are not able to hire a Registered Nurse to oversee healthcare or have a dedicated Healthcare Coordinator to manage the variety of healthcare needs. Again, the intensity of these needs are increasing.  We need to have providers trained in the particular needs of the population with intellectual and developmental disabilities. These aspects of care should not be “extras” but should be part of the service. But,  unless an agency is able to fund raise for these critical necessities  to a meaningful life, the clients will go without.

In my son’s situation, the transportation and healthcare are paramount to the success he is experiencing. .  My son has a job at Lowe’s working 2 hours each weekday morning  (supported employment provided by PROVAIL). and needs transportation to and from work .  He also has medical treatments at least 3 times a week for which he needs transportation and support at the treatment in addition to other medical appointments about once a week.  Without a dedicated vehicle for each home supported by Alpha Supported Living these necessary trips would be impossible.

It is only through fund raising that Alpha Supported Living is able to provide these life necessities to ensure not only the basics are provided but other opportunities to have a meaningful life – art classes, walking clubs, cooking groups, community outings are just a sampling of the other “extras” that help to provide quality experiences to one’s life.

Living in a home with supported living as opposed to in a state operated ICF/ID, is a collaborative effort.  We, as parents, guardians, residents, community members and staff, can make a real difference.  We can adapt to changes better and address issues directly when they arise.  There is more control over one’s life.  We can actually DO something to help make one’s live more meaningful – something that we generally cannot do for those who live in a state operated ICF/ID.

Below are some suggestions for what you can DO to help make someone’s life better:

  1.  Communicate this great need to our legislators – we need to meet minimum wage requirements and keep pace with the cost of living increases that we all experience.

2. Make a donation to a supported living agency to help provide for supports other than direct care staff wages.

Below is an example of how your donation helps to improve the quality of life of clients supported by Alpha Supported Living Services:

alpha-support-is-critical

(for clarification on the RN – this amount  has to do with the amount needed to bridge the gap between what Alpha is funded and what they provide. The professional services rates they receive from DDA provide for a part-time RN. The amount listed gets them to a full-time RN for 6 months)

If you would like to donate to Alpha Supported Living Services you can reach them at

Alpha Supported Living Services

MAIN OFFICE
16030 Juanita-Woodinville Way NE
Bothell, WA 98011

t 206 284 9130 | f 425 420 1133

 

Please join me in making a monthly donation to Alpha Supported Living Services – it WILL make a difference in someone’s life!

 

 

 

 

 

 

 

Paid to not think

One hot day I visited my son at his home at the state operated intermediate care facility where he lived.  There was a portable oscillating fan going in the living room.   I was glad to see that they had provided some sense of cooling to the room.

As my son made his way over to the fan I knew he would try to touch it as this would be typical behavior for him but I wasn’t concerned since fans have covers on them which prevent him from putting his fingers into it.   As he stuck his finger into it and the blades stopped and he pulled his finger out yelping, I suddenly realized that this fan had no front screen protector on it.  I could not believe that the staff would put such a fan right out in the open.

The two direct care staff were right there and when questioned, they stated they knew there was not a cover but they had asked the charge about it and there was not another fan to use.  I then left to go ask the charge myself about the fan.  The charge staff just shrugged his shoulders and said there had been a cover yesterday.

At that time I saw another fan that was not being used and asked the charge if I could take that one to use.  He was non-committal and totally unconcerned and was not going to do anything.  Since he wasn’t going to give an answer I asked what I could do and he told me I could go to the duty office.  So now I went to the duty office to inquire about a fan.

At least the person in the duty office had an answer – that unused fan belonged to someone else and I couldn’t just take it to use in my son’s home. That was an answer that I could work around but what I couldn’t grasp was the total lack of concern of common sense on the part of the direct care staff or the charge person for the unit.

When I brought this safety concern to the attention of administration I was told that the staff are not trained to think – they are only to take orders and they fear that if they make any deviation from that order they will be reprimanded.  This answer also made sense and was obviously correct from my observations of what had occurred but was far from reassuring that these direct care staff were in charge of the care of my son and his housemates.  .

I thought of this situation yesterday after I had a meeting with the new Clinical Director of the Outpatient Specialty Healthcare Clinic I work at. He referred to the book by David Marquet Turn the Ship Around .  As I was listening to the talk and watching the video I realized that part of the problem in the state operated Intermediate Care Facility was the fact that the direct care staff are paid to not think.  They have no ownership, do not feel valued and are uninspired by their lack of decision making power.

This total lack of accountability is something that I have now witnessed from the bottom ranks of the organization to the top of the state operated intermediate facility and the agency that licenses it.   While I fully believe we need to have the continuum of care I am angry at the lack of accountability and the fact that when issues of concern are brought to attention they are covered up rather than dealt with.

We are entrusting the care of our loved ones to a work force that is not allowed to think. This scares me and is great concern and I can’t keep quiet about it. While I understand that a state operated facility works withing the government and change may be hard, change is not impossible.

Denial is a powerful tool.

 

 

 

 

 

Supported Living Crisis

It is absolutely necessary that we provide funding to support our direct care providers in the community settings.  We have been in a crisis situation and it is only getting worse.  It is time to step up and provide the support that we all say is needed but do not provide the funding to back the words up.

Please read the position paper Underfunding of Community Residential Services by the Community Residential Services Association.  While I do not have all the cost reports of the community service providers nor the cost reports of the state funded services to compare the cost of care, I do know that the cost of direct care for those with high support needs is about equal across the board.

It is the costs of all the other services that add up and can make one type of residential setting appear more costly than another.  It also depends on what is included in the cost reports.  I believe there is cost shifting and capital costs which may not be reflected but, again, I do not know for sure since the data is extremely difficult to sift through.  It is something to take into consideration.

Regardless of the cost issue there are other major concerns that need to be factored in. Personal Choice of residential setting, access to quality health care, continued learning opportunities, employment and meaningful life activities all need to be included in the big equation.

There is not one type of residential setting that guarantees that all these aspects of life will be met or even considered but I do believe that living close to family, friends and natural supports does increase the chance that the person will have a meaningful life that is fully integrated into community.

 

 

 

Congregate is not the same as segregate

I am very disappointed with the Joint Position Statement published June 23, 2016 by The American Association on Intellectual and Developmental Disabilities (AAIDD) Association of University Centers on Disabilities (AUCD).

While there is quite a bit of quality information in this statement it is obviously clear that these organizations also have a strong bias against choice of residential settings.  It is unfortunate that these organizations do not understand that congregate care is not the same as segregated care.

“Everyone with an intellectual or developmental disability deserves to live in the community where they have the opportunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions.”  These goals can and are also accomplished in congregate and campus type communities.

Many states have built systems that utilize group homes as a key way to support people in the community. When people find themselves in a situation where they need to live outside of their family home, they are often placed in an “open bed” versus being offered person-centered supports designed specifically to meet their needs. In many of these situations, people remain as isolated in these settings as they do in a large-scale institution. A process for creating and sustaining supports that make their living situation a home in a neighborhood is needed.

It is clear from the above statements that these organizations realize there is a problem with the funding and system that many supports are built around.

Yet AAIDD and AUCD are doing exactly what they chastise others for doing – categorically denying the individual the personal choice for individualized care in the residential setting they choose.  The setting is not what necessarily causes the segregation – separation from familiy, friends and community causes segregation.  Unfortunately that segregation can happen in any residential setting.

It is the segregation that needs to be called out – not the setting.

 

 

Not Just the Next Empty Bed

Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement.  It was a difficult decision to make given all the research that I have done regarding care and oversight.  Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community.  I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings.  I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.

But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger.  There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns.  The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly.  My hands were tied  due to the inability of the facility to acknowledge problems – not one specific problem but many.  I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.

But, my son had one option in this that most other people do not have – the option of CHOICE.

While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him.  We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.

Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies.  When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.

One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)

We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.

It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available.  This is not a system which supports person-centered choice or real community.

There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.

Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.

Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community.  My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.

Letter from DRW to DSHS and HCA

DSHS and HCA response letter