Person-Centered Planning – Buzz Word or Reality?

We believe in Person-Centered Planning which means looking at cultural humility and competency, taking into account the whole person, including the complexity of his or her world view.

Man walking and balancing on rope over precipice in mountains

How can this be done when advocates do not even speak to other advocates, assuming rumors they have heard about other peoples beliefs rather than talking to the people directly?  How can this be done with family, parent, and care-giving advocates are blocked from Parent to Parent groups or blocked from publicly funded advocacy agencies such as Disability Rights Washington, (Protection and Advocacy Agency for Washington Stated) or The Arc Franchises (which are non-profit but receive public funds for outreach and advocacy) – or from participating in the Developmental Disabilities Council – which is a Federal-State partnership working to plan for and with people with developmental disabilities and their families.

Connect collaborate communicate contribute

There is a huge abyss that so much hard work, passion and caring is falling into because of this lack of ability to communicate with others.

Disability advocacy should not be a tug-of-war between 2 opposing sides – but that is what has been going on for years and it seems to just be getting worse. Disability – and in particular intellectual/developmental disabilities – is a complex web of abilities, independence and inter-dependence.  Many systems, which often are in their own silos, must be pieced together to make person-centered planning work for each individual.  This is no easy task – especially when people, agencies and advocates do not communicate with each other.

In order to make things work, we need to communicate.  We may not need to agree on everything but we need to communicate so that people know and have opportunities to understand what supports and services are needed in order to function in our communities.

Without communication and listening to those who actually use the supports and services, how can we, as a community help provide appropriate resources.  Communication is critical in avoiding unintended and detrimental consequences such as the person becoming disengaged in the process.

We need to ensure that people who use the supports and services, in addition to families and caregivers, have opportunities to be involved in new program developments.  The value of their life experiences is necessary in evaluation and feedback regarding the system and advising on policy decisions.  These are the stakeholders who we need to communicate with – not just the “professionals” or service providers.

Any changes need to be transparent from planning, monitoring, implementation and evaluation of changes made, to those who will be utilizing the services.  The individual,  their families, direct support caregivers and friends are the experts that need to be heard with their collective voice of supporting the person who is the center of the plan.

 

 

 

 

 

 

Evaluate the damage first

In King County, Washington State and across the nation service and employment options for people with significant disabilities are being taken away.  Washington State decided to begin the phase out of pre-vocational services and transition participants into employment or community inclusion services in 2015.  The process was completed by January 2019 in King County.

Gold Guy Kicked Out

Important Definition to understand and remember when reading any data regarding “EMPLOYMENT” in Washington State when connected to people with Intellectual and Developmental Disabilities;

EMPLOYMENT –  gross wages are anything greater than ZERO during the previous 3 month time period.

 

We ask that the JLARC report be addressed and an evaluation of the damage done be completed prior to any more transitions and forced choices be made for this population.

Despite it being an objective of Developmental Disability Administration that DDA services provide quality of life benefits for clients, such as choice, relationships, integration in the community, and competence, there is no tool to measure this and so, unfortunately, we are unaware if the person’s choice was honored or if the changes have affected their quality of life.

This is what has happened in King County –  there were 143 people in pre-vocational services prior to denial of services.  These people were employed and working an average of 14.6 hours a week – some of this time was paid and some was not paid since other activities also took place on site.

AS of May 2019, here is the breakdown of what these 143 people are doing and what services they are provided:

37  – people do not have any services or open contracts – this could be for a variety of reasons – at any rate, they are not receiving employment or community inclusion supports

62 people are authorized for employment support – only 24 of these people are actually employed though

Employment rate of 39% – working an average of 6 hours a week 

44 people are authorized for community inclusion

Community Inclusion – 4 hours a week of community activities

Due to the forced choice and transition, people in this population went from an employment rate of  99%  to about 17% employment.  This is how Employment First works in Washington State.

2015 – 143 people employed in PVS  with 99% employment rate

2019 –   of those 143 people in 2015 only 24 are “Employed”  – this is an employment rate of 17%

  • Authorized does not mean the person is actually receiving any services or supports. It just means that they are authorized to receive those services/supports if they are available.

 

  • Employment First in WA means that one MUST utilize employment services for at least 9 months prior to Community Access services – these cannot be provided concurrently. There is a special waiver for a select few who may not need to “participate” in employment services for 9 months prior to Community Access services but this is very rare.

 

  •  For Individual Employment, support hours up to 26/month are paid at $73.00/hour, above 26/month are paid at $30/hour and the total fee is adjusted up to a maximum payment of $2,700/month – this cap will be increasing though.

Information provided by King County Developmental Disabilities Administration and State Data

More subminimum wage – can we just get real

EHB 1706 sits in the Senate Rules Committee.  As long as it’s in Rules committee there is still some hope that reality will set in that this bill not only short-sighted but harmful.

I am writing with some major concerns regarding issues with EHB 1706. While this bill may have started with good-intentions, it is extremely short sighted regarding the complexity and collaboration needed in any supports addressing the needs of our disabled population affected by significant intellectual and developmental disabilities. Contrary to what has been said in hearings, it is not common practice to pay disabled people less than minimum wage. It is not common practice to use special certificates for a commensurate wage.

Special certificates for a commensurate wage are not the same thing as “warehousing people in sheltered workshops”. Special certificates do allow a choice and alternative for those who may not be able to work independently in a competitive market or for those who enjoy the camaraderie of working with peers.

We no longer have sheltered workshops in our state but these certificates are very much desired by those who chose to work in group integrated employment in community settings. Person-centered planning and adherence to the Olmstead decision regarding choice are issues that would be violated if this alternative was removed from a smorgasbord of opportunities that people with significance disabilities may choose from. Again, the issue is choice. No one is forced to use these and they are not common practice – but for those who do choose to use them, this opportunity can be life saving. Why take this away?

Other concerns regarding the issues of supported employment in our state – if the support is considered only short-term until the employee is able to be independent or the employer builds in enough “natural supports” so that the employee does not need a job coach, this will lead to even more unemployment in this population. Unfortunately, I know this too well given issues with my son who works in supported employment with a 1:1 job coach. This is not something that he will “outgrow” but a support that he will need the rest of his life. Is he going to be the victim of this policy when it is decided that job supports are no longer needed because he’s had enough time to learn the job?

It is not common practice to pay people with disabilities less than minimum wage. These special certificates are for specific employers, specific jobs, specific employees and for a specific, limited time. It is common practice to pay people with disabilities minimum wage or higher but their work hours are greatly reduced. For instance, my son works in supported employment in a competitive integrated job – he earns $16.58 an hour – a great wage for him. He only works 7.5 hours a week. This is also great for him because of his disability – working more hours a day would be disastrous for him.

While this bill seemed to have good intentions – it is extremely short sighted. There was a failure to even address the recent JLARC report which addresses how few hours disabled people work and less than 10% make a “living wage.” DDA intends that its services provide quality of life benefits for clients, such as choice, relationships, integration in the community, and competence., however there are no evaluations that are done to measure if this outcome is met.

We hear from an affiliate of the national Arc Agency that Washington ranks highest percentage of “employment and day services clients” enrolled in employment services. (87%) But – “Not all clients who receive employment services have a job” which is very clear when scouring the data reported by the county contracted providers ( https://www.statedata.info/washington-ddd/) When one of the affiliates testified that working under a certificate was something that was forced on them by “well meaning do-gooders”, it inhibits their growth as employees, chances of advancement and their ability to support themselves and live off of public assistance. This person is speaking from a totally different reality and perspective than that of the people who have chosen to work under a certificate or of a person, like my son, who while able to learn and function with appropriate supports, will never be independent, able to support himself or live off of public assistance. We need to face reality and this bill is not the way to do that.
Below are just a few bullet points from the JLARC report that need to be taken into consideration:

JLARC staff analyzed DDA data for the 6,975 clients enrolled in individual supported employment during fiscal year 2018.

• 675 clients (10%) earned more than the federal poverty level ($12,140 per year for a single person).
• Earnings vary by support needs. 2 Clients with lower support needs tend to earn more wages.
• 44% of clients with high support needs were unemployed. This is double the rate for clients with medium support needs and five times the rate for clients with low support needs.
• Clients with high support needs who were employed worked 21 hours per month on average. This is less than half the average hours for clients with medium support needs, and a quarter of the hours for the clients with low support needs.
• 99% of clients with high support needs earned less than the federal poverty level.

Addressing this issue only from the Department of Labor viewpoint totally misses the collaboration needed to provide appropriate supports for our disabled community members and I find this approach extremely harmful to those people it was supposed to help. The misinformation used and biased opinions heard regarding choices and alternatives for those with significant disabilities has been ridiculed and dismissed as “living in fear”. I and others who live this life challenge you to listen to those who are actually affected by these policies – not necessarily the people you are hearing from. We need an opportunity to be heard too but when we are censored and blocked from the affiliate agency, it appears to legislators that we do not exist.

Our hope is that this will change. We are gathering people who have first hand knowledge of the issues and how these policies are actually hurting, rather than helping those we live with, care for and love.
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“Things I Mean to Know” (Sheltered Workshops and Supported Employment)

I was recently listening to the Podcast “This American Life” and was struck by the very question that I keep asking of advocates with regards to intellectual disabilities.   We are told over and over again that “evidence shows” yet have these advocates really looked at the evidence or are they just taking on faith what they have heard and have believed it?

Questions asked are “how do we know it’s true?”, “what is the proof of it?” “how much have you accepted without evidence?”

“Sometimes there’s a thing that you think you know, even though, right in front of you, staring you in the face, is clear evidence to the contrary.”  There are also the issues of denial  and deceit at play when censorship of opinions and experiences are practiced.

The most recent issue with lack of evidence is in the recommendation of the Seattle Commission for People with Disabilities (PwD Commission) to immediately eliminate the special certificates for employees with disabilities who would earn a sub-minimum wage.  Supposedly, the commission did 4 months of “intensive research” but they have not been able to provide any documentation of their research other than  opinion pieces, articles that actually oppose rapid elimination of the certificates or outdated research.  (Below this post are links to the documents the PwD Commission provided as their research into the issues of sub-minimum wage).  They have not been able to address the issues I have asked with regards to how this recommendation will affect other aspects of the people’s lives.  Apparently,  from the answer I received, the other aspects are irrelevant in this decision.

I wrote a letter to the Office of Labor Standards with my concerns about the recommendation and then again about the lack of evidence that was provided by the PwD Commission in making this recommendation (  letter to Ms. Bull in Office of Labor Standards regarding sub-minimum wage August 2017, non-evidence letter to K. Bull of OLS – November 2017)

One position paper submitted by APSE was used as evidence.  It is very interesting that in reading this position paper and looking up the citations,  the so-called evidence is not there.   They seem totally unaware of the significant limitations written by the author (Cimera) and only use part of the conclusion as the evidence.   (APSE is the Association of People Supporting Employment First –  Subminimum Wage Research Documents from PwD Commission)

Need to keep the findings in context:

  1. Did employee begin work immediately upon enrollment (tends to occur in sheltered workshops) or was there a long process to being employed (more likely in community employment)?
  2. The number of hours worked in each setting is unknown. Sheltered workshop employees by be “on the job” of physically present for 40 hours a week, there may be hours of down time when the employee is not actually working.  Also, by definition, sheltered workshops are continually staffed (this also helps with supports during “down time”)
  3. Community supported employees may not need (or may need) job coaches on site with them and therefore the costs are not influenced as much by the hours worked. Not knowing how many hours were worked and what percentage of those hours was staffed by a job coach, Given the number of hours worked by the employees and the amount of job support needed is unknown there is no possible way to make a comparison of the cumulative cost to that of a sheltered workshop.
  4. There is the issue of “skimming” – that is that even though the participants in this study were classified as having the same level of disability (“most significant”) there is no assurance that the level of limitations was identical.
  5. Given that it is impossible to quantify every variable that could affect cost-effectiveness, let alone find sets of supported and sheltered employees who have identical abilities, every study that attempts to compared sheltered and supported employees might be comparing apples and oranges” (Cimera, 2007)

My opinion is that both options are needed to best serve our population of people with disabilities and more specifically people with profound disabilities including intellectual disabilities.  There are pros and cons to each scenario and it needs to be individualized to the person as to which would be the best option.  This is what PERSON CENTERED PLANNING is about.

This is an issue that is happening all across the nation but there is no actual evidence or reliable research which supports the policies that are making sweeping changes to people’s lives.  When reviewing studies, reports and research, it is extremely important to consider the limitations in that study, the demographics and regional differences and the types of jobs that people are employed in.

Yes, there may be problems with the oversight and management of employment (as can be read about in this article – Segregated and exploited article) under the special certificates but that means we need to correct those problems so the system works as intended.  It does not mean to suddenly change to a different type of program or system that has not been documented to provide any better outcomes for a specific population.  Again, this is where is it critically important to read through the studies and understand the limitations.  The conclusions mean nothing without understanding the limitations.

My questions to the Seattle Commission for People with Disabilities regarding the recommendation to make a rapid elimination of the special certificates and the answer I received, indicate to me that this commission does not understand the full impact this recommendation will make in the lives.

My hope is that this commission does invite and pay attention to people with intellectual disabilities and their support circles.  It is critical to involve the people who will be affected by the change.  Remember “Nothing About Us, Without Us” 

 

References:

Akkerman, A., Janssen, C. G., Kef, S., & Meininger, H. P. (2016). Job Satisfaction of People With Intellectual Disabilities in Integrated and Sheltered Employment: An Exploration of the Literature. Journal of Policy and Practice in Intellectual Disabilities, 13(3), 205-216. doi:10.1111/jppi.12168
Boyd, J. M., & Davis, C. (2016). When good is no longer good enough: Transitioning to greatness. Journal of Vocational Rehabilitation, 44(3), 279-285. doi:10.3233/jvr-160798
Cimera, R. E. (2007). The Cumulative Cost-Effectiveness of Supported and Sheltered Employees With Mental Retardation. Research and Practice for Persons with Severe Disabilities, 32(4), 247-252. doi:10.2511/rpsd.32.4.247
Cimera, R. E. (2010). Supported Employment’s Cost-Efficiency to Taxpayers: 2002 to 2007. Research and Practice for Persons with Severe Disabilities, 34(2), 13-20. doi:10.2511/rpsd.34.2.13
Cimera, R. E. (2016). A comparison of the cost-ineffectiveness of supported employment versus sheltered work services by state and demographics of program participants. Journal of Vocational Rehabilitation, 45(3), 281-294. doi:10.3233/jvr-160829
Cimera, R. E., Avellone, L., & Feldman-Sparber, C. (2015). An investigation of the outcomes achieved by individuals with intellectual disabilities and mental illnesses. Journal of Vocational Rehabilitation, 43(2), 129-135. doi:10.3233/jvr-150762
Cimera. (n.d.). The percentage of supported employees with significant disabilities who would earn more in sheltered workshops.

 

 

School to Work – Successful Supported Employment

King County Developmental Disabilities Division School to Work (S2W) program has been very successful in transitioning youth from school to jobs.  Students with more intensive support needs were not finding the same success – many were not referred to the S2W or if referred, often did not obtain an employment contractor to receive services. Therefore in all reality, these students with more intensive support needs were essentially excluded from the very successful S2W transition program.

I had inquired about participation for my son, Thomas, in years past.  One administrator from Developmental Disabilities Administration told me that my son would not be eligible since the program tended to “cherry pick” those students who they believed would be the most successful – a method used to show a higher percentage of employment.  I was also told that since my son did not live in “the community” he would not be eligible to enroll.

Luckily, with persistence and the development of a pilot program, King County together with several other agencies collaborated and initiated the High Support Needs S2W program in 2014.  Ten students participated and 7 of those had jobs within the first year, 5 of those were employed before they graduated from their school programs.

Thomas was a ground breaker in this program – being the first participant who lives in an Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID).  Not only was he the first participant but he was also one of the 5 who had a job prior to graduation.  He works 2 hours in the mornings (Monday through Friday) at Lowes in North Seattle.  He absolutely loves his job!  We hope that his success will lead others to have similar success stories.

This year KCDDD  celebrated their 10 year anniversary for the School to Work program. A video was made highlighting a few of these employees on their job sites.  Please do view the whole video as it is quite inspiring to see these young adults doing such great work.  Thomas’ section starts at 16:30 into the video.

In meeting with other families in focus groups at the end of the first year, it was generally agreed that the employment vendor and employee coach was the person who could make or break the success of the program.  Listening to the stories of how the employee coaches got to know the students and find jobs which utilized the students strengths and abilities was so inspirational and a huge thanks needs to go out to these dedicated providers.

Personally, we can not say enough wonderful things about those at Provail who have worked with Thomas.  It has been a blessing to work with the team and be involved in this life changing event for Thomas.  Having this job has greatly increased his quality of life and helped transition him from school to work and other life events involved in becoming a young adult.

S2W High Support Pilot –

“unskilled minding”

Progress comes with problems which then need to be addressed.  This is the situation we are currently facing regarding issues of deinstitutionalization.  As with almost everything – there are few things that are ALL GOOD and few that are ALL BAD and this is the case here.  Unfortunately, many advocates have broken this issue into GOOD and BAD without looking at the “in-between”.

People need to realize that by the very nature of the disability “intellectual disability many need other people to help them make decisions on their behalf and their quality of life may depend crucially on the help of others.  Just because one is given choices does not mean that one is capable of making those choices, particularly when one does not have the skill or knowledge to understand the consequences or even a need to make a choice. Choice involves both opportunity and decision-making – freedom to choose, initiative to choose and the skills to choose.  (R.J. Stancliffe, 2011) Those who live in supported living homes are more likely to be vandalized or be exploited by those in the community – yet they have more choice.  Choice, without skills and knowledge is dangerous.  It is important to note that it should not be presumed that independent choice is always the most desirable outcome. (R.J. Stancliffe, 2011)

I believe we need to slow down on this process – not halt it, but take a step back and re-assess what we are doing here. What I have witnessed is an emphasis on quantity rather than quality just to get people out of the institutions, Simply moving people into dispersed homes and thinking progress is being made with deinstitutionalization is a sham.

What comes up again and again is staff support.  Trained, stable staff is the key to good outcomes.  Care providers need training and leadership yet this is not a priority. The lack of capacity leads to priority given to quantity of placements and not quality of placements.  When the funds are spent on the physical placements and not directed to staff training and support we end up with “unskilled minding.” (Mansell, 2006) We need funds to be directed to training in active support and other types of direct help which enable people – especially those with the most severe disabilities – to grow and develop as individuals and to engage in meaningful activities and relationships in their community (Mansell, 2006).”  Unfortunately, this is rare.

It is clear that those people with the highest support needs experience poorer outcomes than those who are more independent.  These people are also the generally the last to move to dispersed housing and they experience more difficulties living in the community at large and are the most at risk. Many of these people have challenging behaviors and need trained staff in safe ratios to care for them.  What happens is these people become isolated and imprisoned due to the lack of support.

What I do not understand is why, when we are facing a crisis situation in our dispersed housing communities, would advocates propose adding to that population without adding adequate supports?  You cannot simply put these people into dispersed homes without the support they need to maintain their quality of life.  This support also needs to be sustainable – not a one year grant.  When a person is totally dependent on another person to even go outside the house the quality of life is dependent on the quality of care and the staff ratios.

It’s also not just socialization but medical health which is affected by this movement.  Regardless of deinstitutionalization stage, important deficits in variables related to medical health were found in family homes and independent living arrangements (Anna P. Nieboer, 2011)

There is reluctance on the part of health care professionals and parent’s to move people to dispersed homes.  Even though there are studies which indicate community living can improve the lives of many people there continue to be many problems associated with negative outcomes. (R. Martenez-Leal, 2011) There are serious deficits and under-performance of outcomes in community-based services which need to be corrected.  Staff training, support and stability is a major issue. These issues need to be addressed and supported in order for families to health care professionals to proceed.

Looking at the care provided has disappeared as a priority in the deinstitutionalization movement.  Without our priorities changing, I’m afraid that more and more people will be isolated and abused for the sake of this movement.

We need to change the focus from looking at intentions and wishful thinking to looking at outcomes and results.

 

 

Bibliography

Anna P. Nieboer, V. P. (2011). Implementing Community Care for Poeple with Intellectual Disability: The role of Organization Characteristics and the Innovation’s Attributes. Journal of Applied Research in Intellectual Disabilities, 24, 370*380.

Mansell, J. (2006, June). Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual & Developmental Disability, 65-76.

R. Martenez-Leal, L. S.-C.-d.-C. (2011, September). The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe. Journal of Intellectual Disability Research, 55, 852-872.

R.J. Stancliffe, K. L. (2011). Choice of Living arrangements. Journal of Intellectual Disability Research, 55, 746-762.