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 –

 

From AADMD – Virtual Grand Rounds

AADMD Presents:
We would like to extend a special invitation to attend our next Interprofessional Virtual Grand Rounds: Impact of a Medically Complex Patient Care Model on Cost and Utilization among Young Adults with Special Health Care Needs on October 2, 2018 8:00 PM EDT at:  https://register.gotowebinar.com/register/577645319591903491
 
Not only will you have the chance to participate live in these engaging sessions, but you will also be able to access these recordings in a Virtual Grand Rounds library on the AADMD YouTube channel for viewing whenever you would like. The videos can be found at: https://www.youtube.com/playlist?list=PLdZNR08Nu733MlVd5TiC-TQbeN0BeMuD1 
 
Please disseminate this information to anyone who you think would benefit.
 

This session will be led by Dr. Tomas Davis, a 2008 graduate from Drexel University College of Medicine in Philadelphia, PA. He completed his combined residency in med-peds at Geisinger in 2012. He served as med-peds co-chief during his fourth year. He is currently director of the comprehensive care clinic, designed to care for adolescents and young adults with complex medical illness that start in childhood and will follow them into adulthood. The clinic operates as a combination of both the medical home and complex care delivery models. He has received a grant from the Picker Institute, “Employing a Patient-Centered Approach to Develop a Medical Passport to Improve Transition and Educate Health Care Providers.” The information obtained from this grant has been presented at both national and international conferences and has been incorporated into the comprehensive care clinic. Dr. Davis is also active in the Health Care Transition Research Consortium leadership group looking at improving transitions of care nationally and internationally. He has worked on multiple projects on transitions and continues to look for new and exciting projects for residents to participate in. Most recently, he has received funding through GHP Quality Fund to be clinical lead for the Medically Complex Pediatric Patient Care Model redesign looking to combine both clinical enterprise and health information technology to improve care for the most medically complex pediatric patients. When not in the hospital he enjoys spending time with his daughter and wife, watching Philadelphia sport teams, cooking, and exploring the area.  

Presentation description:

Adolescents and young adults with special care and health needs in the United States–many of whom have Medicaid coverage–at the transition phase between pediatric and adult care often experience critical care gaps. To address this challenge, a new model referred to as Comprehensive Care Clinic (CCC) has been developed and implemented by Geisinger Health System since 2012. CCC comprises a care team, consisting of a generalist physician, pharmacist, and a nurse case manager, that develops and closely follows a coordinated care plan. This presentation examines the CCC impact on total cost of care and utilization by analyzing Geisinger Health Plan claims data obtained from 83 Medicaid patients enrolled in CCC.   The results indicate that CCC enrollment was associated with a 28% reduction in per-member-per-month total cost, driven by reductions in hospitalization and emergency department visits. This finding suggests a clinical redesign focused on adolescent and young adults with complex care needs can potentially reduce total cost and acute care utilization among such patients.  Also, he will discuss how this can be translated to other home institutes. 

 
Please register for Interprofessional Virtual Grand Rounds using the link above. After registering, you will receive a confirmation email containing information about joining the webinar.
Not sure what AADMD is or would like to learn more? Visit us at www.AADMD.org for more information and to become a member!

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!

 

 

 

 

 

 

 

Whistleblowing

Someone needs to speak up and I’ll keep speaking up until some of these serious issues of healthcare inequity are actually looked at and corrected

A recent blog posting entitled “The Journey of a Whistleblower: The Challenges, the Pains and the Price ” identifies some of the issues when one is faced with some ethical decisions.

While my son was a resident at a state operated intermediate care facility, I brought issues of concern to the administration and the medical director.  When no action was taken, I approached the Human Rights Committee of the facility.  They did not think that the issues of healthcare neglect and injury were a concern of theirs.  I then went to the advocacy group for the residents of the facility.  The president told me that their goal was only to keep the facility open – they had no say in assessing or measuring standards of care.

Obviously the healthcare and quality of life for the residents was not on the radar of any of these groups.

So, I keep trying to get people, organizations, legislators and agencies to see the serious concerns with medical and nursing care at some of these facilities.

If your loved one was dependent on the care provided in a healthcare facility, would it be important to know that all the prescribed medications and treatments were administered?  Or would it be okay for the nurses to only administer sometimes but document that all prescribed administrations were completed?

Would medication compliance rates of 11-46% be acceptable to you?  These rates are certainly not acceptable to me.

But it’s not just the low compliance rates I’m concerned about – it’s the years of falsified records across the board on a variety of medications by many nurses that is a huge concern.  Who is to know if the medications are really administered with so little oversight?

Who monitors medication administration – apparently no one and this is a major problem that needs immediate attention.

There is immediate jeopardy to all residents of the facility until the medication administration problems are examined and corrected. It is shameful on the part of our state agencies that these practices have been and still are accepted practice.

As a nurse myself, I know this practice is unethical and illegal to falsify these documents.  I question the level of integrity of the nurses working at this facility who routinely engage in this illegal activity.

This time has come to go outside the state organizations and inform others.  It is not just about keeping a facility open, it is about providing safe, quality care.  Care that is not happening at this time.

 

Arc of Washington State – Question their data and resources

The Arc Washington State recently sent out an alert “Crisis Stabilization Needed in Local Communities.”  While this is indeed needed, the information provided by The Arc Washington is not only incorrect with facts but much is actually fiction.

As a respected advocacy agency which many legislators and community members look to for guidance publishing alerts such as this actually hurt the people The Arc is supposed to be supporting.  Where is the integrity and transparency in their reports?

The Arc states that “On average, only 1-3 beds a month are currently used for any respite.”  The Data obtained from the Department of Social and Health Services Executive Management Information System (EMIS)  dates June 2010 through June 2014 clearly show that the Arc is very incorrect.  Below is a graph of the data obtained from the EMIS.  The average has actually been 32 respite clients per month at Yakima Valley School.

Community Respite in RHCs

The Arc states “The cost for placement in Yakima Valley Nursing Facility is $587 A DAY, much more than a community setting.”  Again, data obtained from the EMIS and from the Office of Chief of Policy and Programs, DSHS Quality Programs and Stakeholders Office Chief, and the Crisis Services Program Manager,   the cost of community crisis respite is $1,166 dollars A DAY as opposed to the average $441 at Yakima Valley School of which only $216.00 is the cost to our state when the Federal Medical Assistance Program (FMAP) is taken into account. (EMIS 2012-2014)

Respite at YVSWhen provided with the actual data, one can see that we need to pass E2SSB 5243 rather than reject it.

This bill does not address anything having to do with respite that people receive in their homes and communities and will not take anything away from them.  It will only provide much needed services and help prevent crisis and family breakdown.

Yes, we all want respite in our communities but it is not happening for various reasons.  Respite can be used for a variety of community outings and opportunities but out-of-home respite is also needed.  I can tell you that if my son had been allowed to have any out-of-home respite at all while living at home on a waiver, it may have saved our family and may have prevented him from being moved into the RHC.  I believe that out-of-home respite is an essential component of the whole respite program and will add to the sustainability of community programs.

Resources:

Data received from the Department of Social and Health Services, Executive Management Information System  June 2010 – June 2014, with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions –http://www.dshs.wa.gov/pdf/adsa/ddd/policies/policy3.04.pdf

Report to the Legislature – December 5, 2011  http://www.dshs.wa.gov/pdf/adsa/ddd/Fiscal%20Status%20Report%20Consolidation%20of%20RHCs.pdf

“No Room?”

The list of words below is taken directly from the Developmental Disabilities Administration Vision, Mission and Values Statements:

Supporting Individuals – Continually improving supports – Individualizing supports – Building support plans based on needs – Engaging Individuals and families – transforming lives – Respect – Person Centered Planning – Partnerships – Community Participation – Innovation

I wonder why these concepts are violated by the very agency to which they belong and the agency which is there to build and sustain supports for our citizens with intellectual disabilities.

Currently, we have people in crisis in our local community who are eligible for and have requested emergent admission to the local Residential Habilitation Center, Fircrest (RHC).  The request was denied based on “no room” and the department is working hard, against the choices of the individual, her family and her guardians, to “divert” her to “community” homes which are not safe or appropriate for her needs or ship her away to the RHCs far from her family and community.  How do these actions fit in with the vision of the department?

Fircrest Institutional campus

These actions are not unique to the individual mentioned.  This is how the department chooses to manage the choices and requests of those with high support needs who request the supports and services available at the RHCs.  We hear that people do not want these supports and services, but this is not the real story of what is happening behind closed doors.

These photos below were taken August 1, 2014 showing a fully remodeled and empty unit which could house up to 16 people who need supports and services.  These are at the very RHC which the department states “no room”.  If we were allowed to utilize these units on campus we would not only be providing much-needed services to individual and their families but also being good stewards of our public resources.

open room 1 oepn roomopen kitcen

There is no reason people who need the level of supports in the RHC are denied due to “no room.” 

It is simply not true.

Please help us  utilize the resources we have.

 

By utilizing the resources we have we can help prevent crisis and trauma to people and their families.  We can support stability in people’s lives and have sustainable programs – if we were only allowed to do it.

The restrictions being forced upon people with intellectual disabilities are limiting their choices by making false assumptions about what people need and want.

Help us to hold the Developmental Disabilities Administration accountable to their own Vision, Mission and Values Statements!

DDA mission and vision

Mobility Park

We are on our way to major improvements for health, safety and community spirit building!

Please join the efforts in transforming the dangerous sidewalks in our community to a safe, welcoming, ADA accessible “pedestrian promenade.”

Our Campus Community is in great need of safe, ADA walkways.The campus is a beautiful setting and home to many of our loved ones with intellectual/developmental disabilities complicated by complex medical and/or behavioral concerns.

sidewalks 1

The sidewalks are left over from the 1940’s when this property was used for the Seattle Naval Hospital. The walkways are too narrow for 2 people to walk side by side and are dangerous for those who need assistance with mobility. There are many cracks, holes and uneven areas. Much has been spent on grinding surfaces over the years but this is only a band-aid “fix” to the problem of dangerous, non ADA compliant walkways.

sidewalks 6

http://www.gofundme.com/Fircrest-Mobility-Park

Given that this community is a community of people with disabilities, it is time that we supported the construction of ADA accommodations in the walkways on campus.

sidewalks 5

http://www.gofundme.com/Fircrest-Mobility-Park

Adding a pedestrian promenade will greatly enhance the life experience of our residents – we see it as a community connector and will be an invitation for them to get outside, walk, enjoy the sites and company of others and build community.

sidewalkes 3

http://www.gofundme.com/Fircrest-Mobility-Park

Please help us fund the survey and design for this much needed walkway.

sidewalks 4

http://www.gofundme.com/Fircrest-Mobility-Park

THANK YOU

 

Design Team:

We are building our design team.  Peggy Gaynor of GAYNOR, Inc. is providing landscape architectural design & consulting services on behalf of the project.  As soon as we have chosen our surveyor and/or civil engineer, we will publish their names as part of the professional design team also.

http://gaynorinc.com/design-philosophy/

 

“Deathmaking”

I wrote the letter below to the National Council on Disabilities for their meeting this past week. In doing research for this, I came across much information on “Deathmaking” and am horrified by what I have been reading. But on the brightside, it has also led me to the works of Dr. Wolf Wolfensberger, Syracuse University and Social Role Valorization.  There is a wealth of information here which is critical to our understanding of living with people who have developmental disabilities.

Letter addressed to the National Council on Disability (December 4, 2013):

In the recommendations to close and consolidate the Intermediate Care Facilities, please keep in mind that these are medical/healthcare facilities. These medical facilities provide not only nursing and medical care but dental, psychological, education, vocational and social/recreational in addition to habilitation for building skills for activities of daily living.

The North American Industry Classification System (NAICS) is the standard used by Federal statistical agencies in classifying business establishments for the purpose of collecting, analyzing, and publishing statistical data related to the U.S. business economy. In reviewing the NAICS, it is clear that they have a better understanding of the supports and services needed by our citizens with developmental and intellectual disabilities than many organizations which claim to advocate for those with DD/ID. As you can see from the excerpt taken below from the NAICS website published by the U.S. Department of Commerce. (http://www.census.gov/eos/www/naics/)

“Sector 62 — Health Care and Social Assistance

The Sector as a Whole

The Health Care and Social Assistance sector comprises establishments providing health care and social assistance for individuals. The sector includes both health care and social assistance because it is sometimes difficult to distinguish between the boundaries of these two activities. The industries in this sector are arranged on a continuum starting with those establishments providing medical care exclusively, continuing with those providing health care and social assistance, and finally finishing with those providing only social assistance. The services provided by establishments in this sector are delivered by trained professionals. All industries in the sector share this commonality of process, namely, labor inputs of health practitioners or social workers with the requisite expertise. Many of the industries in the sector are defined based on the educational degree held by the practitioners included in the industry.”

What has happened is that those who claim to advocate for people with ID/DD have only looked at the social assistance and have ignored the healthcare aspects. As you can see from Sector 62, those with ID/DD are on a continuum and we must provide supports and services for ALL people on that continuum – not just those who are “higher functioning”

This method of advocacy is tantamount to a new genocide -or “deathmaking” as described by Wolf Wolfensberger (2005) . This means that denying access to needed healthcare, separating people from their homes and communities leaving them without help and protection, imposing a dying role on people or destroying their will to live are all examples of a “new genocide” which many are imposing upon our most vulnerable citizens.

This is a crime – please reconsider your policies regarding “deathmaking.”

Why didn’t you use your award?

92% of the families who received Individual Family Support funds used less than 80% of their award.  41% used nothing.

I want to ask these families why they didn’t use these funds.  I cannot imagine that they didn’t need the money so there has to be some reason why these families did not access these allowed funds that were awarded to them to help with the care of their family member with developmental disabilities.

IFS Level

# clients

Current Award

Number of clients and the percentage of the award they used in the plan year

0%

1-20% 21-40% 41-60% 61-80% 81-100%

1

141

2000

76

24

12

10

6

13

2

319

3000

144

60

42

32

18

23

3

485

4000

176

108

74

65

28

34

4

203

6000

74

39

28

24

20

18

 total

1148

470

231

156

131

72

88

This chart was taken from the Rule Change WSR 13-17-062

WSR 13-17-062 (1)

I cannot believe that these families did not need these funds yet this is apparently what DDA believes.  Without knowing why these funds were not used, how does DDA know that the families who unused funds will be re-distributed to will be able to use these funds?

Or is this just an attempt to “serve” the unserved without actually “serving’ them.  Looks good on paper but in reality is nothing.

Please contact me regarding information you would like to share regarding your IFS funds.  I am collecting responses (can me anonymous) to make a report.

1.  What was your award amount?

2.  How old is your child?

3.  What is the child’s disability?

4.  What did you use the funds for?

5.  Were funds denied for services or equipment you requested?  If so, what was the reason?

6.  Were you able to find services that you needed?

7.  Was the lack of service providers or quality of service providers an issue in being able to utilize these funds?

If you are willing to answer the questions above, I would appreciate it.  This will help with insight into the problems with this program and how to help those in need.

You can contact me at:

becausewecareWA@gmail.com

Rule changes to serve “the unserved”

rule making

 

Washington State Department of Social and Health Services and the Developmental Disabilities Administration (DDA) has posted immediate rule changes to increase the capacity of families enrolled in the Individual Family Support Program (IFS).  The reason behind this change is to “enable families to continue caring for their family members in their own homes and help stabilize families and individuals who are experiencing increased caregiving stress and crisis by providing respite from their caregiving duties.” I wholeheartedly support the idea behind this rule  change but also understand that this is an attempt of too little, too late and does not even address the real issue.

DDA states that the families receiving funds at this time are not utilizing their full “awards”.  DDA reports that only 55% of the IFS funds were used for respite and that  only 8% of the total number of families have used 81-100% of their awards.  (see attached for full explanation and percentage of funds utilized) WSR 13-17-062 Rule Change for IFS

It is extremely unfortunate for our families in need that the right question is not being asked and therefore, the solution DDA proposes will not address the problem.

The right question is – When you have families in need and they are awarded funds for services which would help relieve some of their crisis, why are they not using the funds provided?

Asking this question might give some answers to the problem.   DDA skipped this important question in determining a solution. DDA has concluded that since these families are not using the funds, they don’t need them and so DDA has decided to reduce the award and give the unused portion to other families in need.  On the surface, this is a logical solution, but again, it is not the answer to the question that needed to be asked.

The real problem is that our state has put a limit on the number of caregiving agencies families are allowed to use with these funds. These contracts are only opened up every 3 years so no matter how much money is awarded,  we do not have caregivers who the state will allow these families to use these funds for.  We do have caregivers available, but since the state has closed their contracts, these families in crisis can not access the use of these qualified caregivers.

I know this for several reasons – as a family who had been awarded funds for respite and not being able to hire a contracted caregiver I was well aware of the situation in the family.   The funds were useless without a caregiver to use them for.  In no way did this mean that we did not need a caregiver  – it meant that there were no qualified, contracted caregivers available.  This not only drove us into deeper crisis.

Now I work for a Home Health Care Agency.  We are licensed, bonded, run extensive background checks on our employees and all caregivers are certified nursing assistants who are supervised by a registered nurse.  I was excited to work for this locally owned and operated agency for several reasons  – one of which was that I could be part of the solution (or so I thought) to the caregiving crisis experienced by our families.

What I found out was that DDA contracts  (although supposedly the waivers are participant driven with respect to choice of providers) were not available.  We were informed that Roads to Community Living, COPES and the New Freedom waiver had sufficient caregivers to serve their clients.  We were denied a contract with the Health Care Authority based on a WAC which pertained to agencies which had their contracts terminated ( given this was our first application this WAC did not even pertain to our agency).  We still have not had an answer to our inquiries and are bounced between various people – no one being able to give accurate information.

 

No wonder our families are in crisis – the Department which is there to help them and navigate them through crisis does does not know their own rules, policies and how to connect a quality care agency to those in need.

So, DDA has a long way to go in trying to solve this problem.  Given that they do not even know the questions to ask to investigate what the problem is and make up solutions to non-existent problems, there is little hope for improvement.