Abuse and Neglect in the Hospital

I am beside myself with anger, frustration and helplessness regarding the situation with our friend, Kevin.
Kevin has not been “on hold” in the ER at PeaceHealth St. Joseph Medical Center in Bellingham, Washington since April 24, 2019 (for this episode)

PeaceHealth

Below are messages that I received from Kevin’s mom and legal guardian last night and this afternoon.  Kevin is a 26 year old young adult.  Kevin is autistic and is a vulnerable adult with a legal guardian.

“Cheryl, the hospital let Kevin leave the hospital and he was on scrubs and no shoes running down one of the busiest streets in town. He made it to the respite bed where he was a couple of weeks ago. He ran in the middle of cars for 2 miles. They called me and let me know he was there, the hospital called me after the respite bed told them he was there. He had blood blisters in his feet. Then they had the audacity to tell Tom (respite care administrator) that Kevin checked himself out of the hospital. The police came later and took him.

“The police took him back to the hospital and told the ER manager that Kevin is gravely disabled and should not be let go in streets like this.

I have asked for a DMHP assessment, but they are giving me the run around

He has blisters on his feet and sticks stuck in his skin – the doctor is supposed to see him sometime today.

They just called me and said they will let him leave again. I guess the DMHP assessment was not done because it was done when he first got to the ER.

It’s a never-ending mess.”

I went to the Bellingham police station and they said that when they drop him off at the ER they let the hospital know that he is a danger to himself and others and needs to be in involuntary confinement.  The hospital disagrees.  I hope he does not escape again tonight – it was a miracle that he didn’t get hit by a car yesterday.

This ongoing nightmare has been reported to the DD Ombudsman, Adult Protective Services, the Department of Health and Developmental Disabilities Administration yet no action is taking place and the hospital is continuing to neglect Kevin and put his life at risk.

As a mother, nurse and advocate I am totally appalled and sickened by the lack of attention and concern that these state agencies, which are there to provide protection and care and the hospital which is to provide safe, appropriate healthcare continue with this neglect.

This is more than insane – is anyone listening?  Does anyone have any solutions?

Kevin’s mother has requested over and over again to allow Kevin to return to Fircrest Residential Habilitation Center (one of our States’ Intermediate Care Facilities) but DDA has continued to refuse saying there are no beds.  If this is an entitlement and there is “no refusal” how can DDA say there are no beds?

Is the only choice to let the hospital and state agencies continue to neglect their duties until Kevin runs into the street and gets killed by a car?  Then what?

Susannah Frame – King 5 Investigator – Please read this and help!

 

Kevin is trapped!

Many have been following the issues of those with IDD who have been dropped off and abandoned by their group homes into the hospitals.  This is not a new issue but one that has finally been acknowledged as happening.  We need a solution  – NOW

Recently, Keven, our 26 year old friend has been “on hold” in the Emergency room at St. Joseph’s Hospital in Bellingham, WA.  I sent an online complaint to the Washington DD Ombudsman and maybe the more complaints they receive, the better the chance at a positive solution – not only for Kevin but for others.

Here is the information that I submitted on my complaint – feel free to submit your own complaint regarding the issues that are happening. DD Ombuds complaint submitted May 6 2019

Today, Kevin’s mom informed me of the following information she received:

Kevin’s situation…

This afternoon after visiting Kevin at St. Joseph Hospital, I was told that if he attempts to leave the unit (SECU).

.. they will let him leave the hospital and 911 will be called.

When is this nightmare going end??

 

 

Into Adulthood – P2P online “support”

These elementary school actions taken by a person named Kate Harris (I have no idea who this person is other than the fact she is a member of the Into Adulthood  Parent support group and does not like the “tenor” of my posts last year) and The Arc of King County Parent 2 Parent group moderators is very puzzling to me.  I thought we were all adults – I would like to try being an adult but sometimes it is very, very hard when I am faced with these behaviors of those who are there to support parents of disabled young adults.

parent to parent support groups through the Arc of KC

 

From: Cheryl Felak <cherylfelak@msn.com>
Sent: Monday, April 15, 2019 8:57 PM
To: Robin Tatsuda
Cc: Rachel Nemhauser
Subject: Re: into adulthood group

Hi Robin,

I’m sending this whole document in an email for your review.  There seems to be some missing pieces from what you remember since I did answer your question regarding the rules.   I have highlighted those responses since there is a lot in this document.

Intoadulthood blocked

The original message I received that informed me of my immediate removal (prior to any discussion or clarification of points I expressed) from the group and follow up letters are all included.  I’m curious if The Arc had problems with it, why wasn’t I notified or asked to clarify some issues.  My goal was to have some discussion about this issue that was affecting many in our community and to inform those who may not have been aware of what was happening behind closed doors.   I understand we have a difference of opinion regarding this – but have you asked to see any of the documentation I have which backs up everything that I have written?  I would be more than glad to share – but at this point, it doesn’t matter since it’s all water under the bridge anyhow as far as issues with Seattle are concerned.

Also given that both Ramona Hattendorf, writing on behalf of The Arc of King County and Robin Tatsuda, (who does not identify as an employee of The Arc of King County) wrote letters endorsing the elimination of special certificates, it is an issue that parents, caregivers, family members of those affected have a right to know and understand what is occurring – especially when it directly affects them.   In fact, there were several letters written by members of the IntoAdulthood group to OLS who opposed the elimination of the special certificates.

Support works two ways and when concerns are raised and just blocked rather than addressed, it then becomes a form of harassment when people in a support group are not allowed to raise concerns on issues that affect them.  The rules of this group state “we focus on support and information” the sharing of information, even if not pleasant should be supported.

I fully understand that the post I made does not agree with the moderator of this group but that does not mean that it is not of importance to the participants.    If I had been questioned at the time, I would have gladly had a conversation to discuss the issues.  Again, at this point, it doesn’t matter and I have no communication or interaction with a particular person.

I would just like to have that explained a little bit more.  I can provide documentation for all issues addressed in this post which substantiate what is written.  I was not asked for that though – it was just assumed I was attacking a particular person (that person was a public servant who self-identified as the person responsible for getting the special certificates eliminated – I certainly did not call them out for something that they were not already identifying as)

If this group is actually for “support and information” then allow it to be that – not all information is pleasant but it may be information that families need to hear -they can always choose to delete or not read if they don’t want to know. But I do have issues with the moderator deciding what information they want the parents and families to know.  This is the real problem I have – I know I and others have fundamental differences of opinion – discussing those differences can lead to healthy solutions.

Again, I have no personal issues with the self-identified person responsible for ending sub-minimum wage in Seattle and the only reason that name was mentioned was due to that person identifying themselves as the person responsible and acting as a public servant in Seattle.  If there is something wrong with asking for accountability and transparency, please let us all know so that we understand the hidden rules to this “support group”

As written in the attached document, I agreed several times to abide by the rules.  I would hope that the moderator is able to do the same.  If not, please let me know that I will not be allowed to participate so I know where I stand.

Thank you,

Cheryl

The next email I received from Robin Tatsuda :

From: Robin Tatsuda <RTatsuda@arcofkingcounty.org>
Sent: Tuesday, April 16, 2019 5:56 PM
To: Cheryl Felak
Cc: Rachel Nemhauser; Stacy Dym
Subject: RE: into adulthood group

Hi Cheryl –

I have learned that you have been participating in the “Into Adulthood” yahoo email group using an alias or having another user post on your behalf.  Either way, this is a violation of our group guideline which states: “Do not post comments under multiple names or using another person’s name”.  You received our full list of group rules and confirmed that you agree with the terms on April 10, 2019, five days before the post in question (see copy at the end of this email).

You have now demonstrated a second time that you are unable to abide by the group rules, most concerningly within one week of reviewing and confirming your understanding of the rules.  Because of this we have determined that you are banned from this group for a minimum of 1 year, after which we will explore your understanding and ability to abide by the group rules in order to rejoin if you desire.

You are welcome to discuss this decision with myself (Robin Tatsuda) or The Arc’s Executive Director (Stacy Dym).  Additionally, our policies include opportunity to participate in a mediation process should you feel you are being treated unfairly.

~Robin Tatsuda

—–Original Message—–
From: Charlie Bean charliebean713@gmail.com [IntoAdulthood] <IntoAdulthood@yahoogroups.com>
To: IntoAdulthood <IntoAdulthood@yahoogroups.com>
Sent: Mon, Apr 15, 2019 11:20 am  (It appears this date/time was edited from the original date/time of April 10, 2019 at 12:09PM)
Subject: Re: [IntoAdulthood] Housing — supported living

I know that supported living is expensive and for those with extremely high support needs it can be more expensive than and RHC.  there was a good question brought up in some thread regarding the hours of supported living care and that one needs to be on the core waiver – the question was asking about this if a person only needs an hour or two a week and that is considered supported living – why does that person need a core waiver when there are others who do not have a waiver but could really use the extensive services.  I’m really curious about this because that does sound as if the core waivers may be used by people who may not really need full support services – I guess there is always “the risk” of institutionalization and it’s based on the CARE assessment and institutional level of care -but sometimes I really wonder what that level of care is in the real world.

With that being said, I was also at the “listening session” for The Arc and the supported living person stood up and said that supported living was not sustainable. Unfortunately, care is expensive but it doesn’t help when the legislature is not informed of the real cost of care but is instead just told an average cost – average does not fund the services that some of our loved ones need.  I really wish there were some more options and there are but not in this state and not with the mindset that many of the advocacy agencies have regarding what is “community” and taking away choices because it’s not community enough for what they believe is best. For us, it goes back to person centered planning and what that person/family needs and chooses.

Our son lived in an RHC for several years and has lived in supported living for the past 3 years.  There are pros and cons to both but overall we are much happier with supported living managed by a non-profit agency..  The team is much more collaborative and accountable and the care givers do  so much more than the same job description care giver in the RHC.

I would encourage anyone to look at Together for Choice and Coalition for Community Choice and listen to any presentations by Desiree Kameka with Madison House Autism. These are all great resources and Desiree is an inspiring speaker with a wealth of information.
Would love to give more info and share to build a coalition around here but I have been banned from this group from the administrator and a friend is posting this for me.  I am very disturbed by the censorship and blocking of those who are in our community who need support or could share experiences but that’s the way this list is run.  If you would like more information you can contact me at cherylfelak@msn.com

 

Robin Tatsuda, MSW | Director of Information & Family Support

Direct 206.829.7011

She/Her/Hers

For people with intellectual and developmental disabilities.

The Arc strives to provide accurate information in a timely manner, with the highest standard of professionalism.  If you have any comments or concerns about the services you received from The Arc of King County, please contact Stacy Dym, Executive Director at sdym@arcofkingcounty.org.

Phone interpretation available |  Interpretación telefónica disponible | تتوفر الترجمه الشفهية عبر التلفون  | Доступна телефонная интерпретация | Fasiraadda telefoonka ee la heli karo |  電話口譯可用。 |  Có sẵn thông dịch qua điện thoại | 전화 통역 가능합니다

 

email from Kate Harris reporting Cheryl Felak on IntoAdulthood

Note email from Kate Harris dated 4/15/2019 at 12:02 PM – could it have been Kate Harris who changed the date/time on the original post from 4/10/2019

 I did send Kate Harris an email

Hello Kate,
I would greatly appreciate you contacting me and addressing these issues that are “highly inappropriate and offensive”.   There are certainly some misunderstandings about what has occurred and I am baffled about your involvement in this – have we ever met or had a discussion?  If so, I do not recall but would appreciate being reminded and updated.

 

From: Kate Harris <kate@crossroadstrade.com>
Sent: Wednesday, April 17, 2019 5:42 PM
To: Cheryl Felak
Subject: Re: Into-Adulthood questions

Cheryl,

My contact with you has been limited to you to what you posted on the IntoAdulthood list. I found the tenor of your posts that apparently led to your removal to be inappropriate and offensive. Evidently the list managers did as well.

I am disturbed that you recently did an end run around your being removed from the list to insert yourself into a discussion. The list is not a public list. I regret that its contents were shared with you. You seem to either not have regard or understanding for list guidelines, which are there for the wellbeing of the overall community.

Katie

After some back and forth with this Katie Harris person,  I then sent an email to Robin Tatsuda at The Arc of King County.  I would really appreciate a mediation meeting to discuss this issue and to clarify the problems.  Hopefully, this will happen before my year of banishment is over.

From: Cheryl Felak <cherylfelak@msn.com>

Sent: Thursday, April 18, 2019 10:55 AM
To: Robin Tatsuda
Cc: Rachel Nemhauser; Stacy Dym
Subject: IntoAdulthood Mediation

Hi Robin,

Here is the timeline of what recently occurred.  I was trying to clean out all my old emails and came across this very old alias account that I had and I have no idea how IntoAdulthood was even on it but it was so I started to read some of the recent posts on supported living and housing options – something I am very interested in.  So I took chances and wrote this post below and even stated who I was – not pretending to be someone else – on April 10.

Kate Harris, who claims to not even have any interest in the topic I wrote about, states she originally complained last year because she did not like the tone of my postings – she didn’t care about the subject matter.  I was banned at that time for “repeated highly inappropriate and offensive posts”.  After I posted this post on April 10, Kate Harris, again, claiming she doesn’t care about the subject matter, reported me for violation of the rules.  I have no idea who this person is and she states she only knows me through this listserve but she doesn’t like my tone and so has reported me.   Is this how parent support groups are run?  This whole process seems very juvenile to me and certainly not supportive of those affected.

I’m curious how many other complaints have you received about my posts?  I don’t need names but would like to know what the complaints were about

Also, you have accused me of writing this post after I wrote and said I agreed to the rules.  Actually writing this post was the impetus to writing again to inquire about being allowed to participate in the group since I had not heard back after I had previously agreed.

I have no idea how the date of April 15 got on the copy of the post that you sent me to prove that I had demonstrated a second time that I am unable to abide by group rules but it would be the adult thing to do to ask me about it but instead I’m found guilty and banished for a year.

What are the policies of mediation?  Also, as a support group for parents of young adults, is there a parent of a young adult – older adult with IDD who moderates the group?  If not, why not?

Please get back to me about mediation – I would appreciate it.

Charlie Bean <charliebean713@gmail.com

Wed 4/10/2019 12:09 PM

  • IntoAdulthood@yahoogroups.com

I know that supported living is expensive and for those with extremely high support needs it can be more expensive than and RHC.  there was a good question brought up in some thread regarding the hours of supported living care and that one needs to be on the core waiver – the question was asking about this if a person only needs an hour or two a week and that is considered supported living – why does that person need a core waiver when there are others who do not have a waiver but could really use the extensive services.  I’m really curious about this because that does sound as if the core waivers may be used by people who may not really need full support services – I guess there is always “the risk” of institutionalization and it’s based on the CARE assessment and institutional level of care -but sometimes I really wonder what that level of care is in the real world.

With that being said, I was also at the “listening session” for The Arc and the supported living person stood up and said that supported living was not sustainable. Unfortunately, care is expensive but it doesn’t help when the legislature is not informed of the real cost of care but is instead just told an average cost – average does not fund the services that some of our loved ones need.  I really wish there were some more options and there are but not in this state and not with the mindset that many of the advocacy agencies have regarding what is “community” and taking away choices because it’s not community enough for what they believe is best. For us, it goes back to person centered planning and what that person/family needs and chooses.

Our son lived in an RHC for several years and has lived in supported living for the past 3 years.  There are pros and cons to both but overall we are much happier with supported living managed by a non-profit agency.  The team is much more collaborative and accountable and the care givers do  so much more than the same job description care giver in the RHC.

I would encourage anyone to look at Together for Choice and Coalition for Community Choice and listen to any presentations by Desiree Kameka with Madison House Autism. These are all great resources and Desiree is an inspiring speaker with a wealth of information.

Would love to give more info and share to build a coalition around here but I have been banned from this group from the administrator and a friend is posting this for me.  I am very disturbed by the censorship and blocking of those who are in our community who need support or could share experiences but that’s the way this list is run.  If you would like more information you can contact me at cherylfelak@msn.com

This is all documented here publicly so that people are aware of the blocking and censorship that is done by an advocacy group which receives large sums of money from state funds to provide support.  When this agency refuses to have conversations and immediately bans and blocks people they are paid to support based on inaccurate information there is something crooked going on.

Who is the person Kate Harris and why does she care so much – if she doesn’t like the tone of what I write, move on – specifically if she has no interest in the subject matter. why would this person feel the need to write to the list moderators and change the date of a post? It is all very bizarre to say the least.

But for the meantime I am banned for at least one year now  – proven guilty without a conversation or mediation meeting – just outright banned for a minimum of 1 year, after which they will explore my understanding and ability to abide by the group rules in order to rejoin – if I desire.

This is insane!

 

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.
=

HB 1706 – another striker bill

 

Change Improvement Development Adjust Transform Concept

Change Improvement Development Adjust Transform Concept

Very interesting hearing today in the Senate Labor & Commerce Committee regarding EHB 1706.  A packed house with people from all over the state to testify against the bill as written – self advocates, healthcare professionals, parents, guardians and other advocates.  There were also the usual people/organizations who were there to testify in support of EHB 1706 but their voices have already been heard.  It was refreshing to hear some new perspective on issues that affect us and those we work with, live with and love.

One hour of testimony with 1 minute each, one after the other as fast as could be done.  All people were then asked to leave the room and there was an executive session – The outcome was passing  EHB 1706 striker April 1 2019  with a vote of 5 -1.

Some notes from the Fiscal note which actually does indicate there will be a fiscal impact to this legislation:

Developmental Disabilities Administration (DDA)
It is assumed that only individuals eligible to receive Individualized Technical Assistance services under an existing DSHS Developmental Disabilities Administration (DDA) program will receive Individualized Technical Assistance services due to an expiring Special Certificate. It is estimated that 421 eligible DDA clients will receive the Individualized Technical Assistance specified in this legislation. It is assumed:
•Each client will receive 20 hours of Individualized Technical Assistance
•Individualized Technical Assistance cost is $130 per hour
•The 421 clients will be provided services between July 1, 2019 and June 30, 2021

One FTE (WMS Band 1) will be needed between July 1, 2019 and September 30, 2021 to:
•Coordinate with the Department of Labor and Industries
•Prioritize clients for services
•Determine service options for clients
•Track client progress
•Accumulate and organize the data required to be reported in Section 5 of this legislation
•Prepare the required reports
Total cost for this FTE is estimated at:
Fiscal Year 2020: $126,000 ($72,000 GF-State)
Fiscal Year 2021: $120,000 ($68,000 GF-State)
Fiscal Year 2022: $ 30,000 ($17,000 GF-State)
Total Costs:
Fiscal Year 2020: $674,000 ($401,000 GF-State)
Fiscal Year 2021: $668,000 ($397,000 GF-State)
Fiscal Year 2022: $ 30,000 ($17,000 GF-State)

Division of Vocational Rehabilitation (DVR)
The DSHS Division of Vocational Rehabilitation (DVR) may see an increase in the number of DDA clients referred for services. However, it is assumed that the increased referrals will not be significant and the related costs can be absorbed within existing resources.

All in all a step in the right direction and some indication that the voices of those actually affected is beginning to be heard – a victory so far in that there have been some crucial corrections made – still some issues to work out.

April 1 testimony opposing HB 1706

Exploitation!

For the many #neurodiversity activists who claim Exploitation! with regards to honoring a person’s choice, we are going to quote some definitions we found for exploitation:

  • The act of using someone unfairly for your own advantage
  • The use of something in order to get an advantage from it
  • The use or development of something for profit or progress in business

(from Cambridge Dictionary.org)

  • unfair treatment of someone, or the use of a situation in a way that is wrong in order to get some benefit for yourself.
  • the process of making use of something so that you gain as much as possible from it

The Macmillion Dictionary.com

  • use or utilization, especially for profit:  the exploitation of newly discovered oil fields.
  • selfish utilization:  he got ahead through the exploitation of his friends.
  • the combined, often varied, use of public-relations and advertising techniques to promote a person, movie, product, etc.

Dictionary.com

Yes, I understand that someone’s making a buck somewhere – that’s business and like it or not, it’s pretty much how things work.

  • Business make decisions on business needs not on vocational rehabilitation needs. Businesses do not necessarily see themselves as employers but as businesses making or producing a product  or service to be sold in the marketplace.
  • We must not convey the notion that business is expected to create a job where one does not exist but we need to look at what tasks they need done and figure out how we can do them to the the business.  This process can serve both the needs of the  individual and the business.

There are new CMS guideline for HCBS waivers – first and foremost Federal policy makers focused the new HCBS regulations on the quality of life of individuals, and emphasized the importance of a person-centered plan and an annual review of that plan in order to make sure their support needs and life goals are being met.

Policy alone will not improve employment outcomes for those with IDD, and in the case of Maine, it can actually decrease employment rates. Across the country, local communities are trying to create employment opportunities that are created around the interests and abilities of those who have not found meaningful work.  These efforts to increase the variety of employment options should not be thwarted by well-intentioned, yet inflexible policy.  One’s choice of where and with whom one would like to work should be guided by the goals, interest, and support needs of each unique individual with IDD as outlined in their person-centered plan.

Also, in case one may not be familiar with person-centered planning – here is a quote taken from the Administration for Community Living website:

Person-centered planning (PCP) allows individuals to be engaged in the decision making process about their options, preferences, values, and financial resources. Individuals in need of services or who are planning for the future have access to one-one-counseling in a variety of settings, including within the home, community residence, acute care hospital, school settings, or several other settings based on the individual’s needs. PCP is a valuable tool for the aging and disability networks that can improve access to care through streamlined partnerships, technology, and resources that put the focus on the needs of people and their caregivers.

The PCP approach identifies the person’s strengths, goals, preferences, needs, and desired outcomes. The role of staff, family, and other team members is to enable and assist the person to identify and access a unique mix of paid and unpaid services to meet their needs, and to provide support during planning and implementation.

When done thoughtfully, PCP creates a space of empowerment—a level playing field—that allows for consideration of personal preferences as well as health and safety needs, without unnecessarily restricting freedoms. The best person-centered planning helps people to live better lives, with support to do the things most important to them.

PCP is a cornerstone of the No Wrong Door systems model.

By the way – advocates – are you being paid for your advocacy work? Is advocacy your employment?   We are a fully volunteer organization doing this work for free on our own time.  We are committed to making services and supports better for each person, as they choose.

Cohesive in Opposition to HB 1706

Hearing for HB 1706 will be tomorrow in the Senate Committee for Labor and Commerce.  We have several groups, advocates, self-advocates and families in agreement that this bill is harmful for a variety of reasons.

First of all, there is no accurate information available regarding how many people are paid a special wage, how many are paid a sub-minimum wage and how many certificates have been issued by the State Labor & Industries.  The US Wage and Hour Division of the Department of Labor lists about 3 times as many certificates as the State L&I reports.  On top of that, Developmental Disabilities Administration reports completely different numbers.

Much more to be commented on later but the very fact that there are such discrepancies in the numbers of people affected and with no information regarding their person-centered plans, it would be extremely irresponsible of our legislature to make any policy decisions based on so many unknowns.