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.

 

 

 

 

 

 

Polk and White Haven – PA Hearings

How did we come to this decision and we didn’t ask the residents or the families – and they are first”  Senator Brooks

Find out more information regarding the importance of listening to the residents, their families, guardians, care givers, community members and legislators.  There are many quality testimonies which provide a variety of different aspect of the importance of these communities.

Public hearing on the Closures of the Polk and White Haven State Centers

PA Senate Helath and Human Services Committee

A Pennsylvania Senate Health and Human Services Committee held a public hearing to address the issues of civil rights violations imposed on individuals and their families who are residents of Polk and White Haven Centers.

Thank you to the members of the Senate Health and Human Services Committee for holding this meeting.  Our voices are being heard and we appreciate the understanding and questioning for accountability and transparency from the Department regarding the process they took in their decision to evict people from their homes.

“Real life matters”  Senator Brooks

Teresa Miller, Secretary, Department of Human Services

“We’re not going to rush this process, we’re going to do it right”

I suppose this could be evidenced by how they handled the problems from Blossom:

Tragic abandonment of residents in Blossom

“This is beyond tragic. This man did not have to die, ” said Kathy Sykes, former director of intellectual disability services in Philadelphia. “This is a colossal failure of responsibility to provide basic care and supervision, a colossal systemic failure to manage a transition, a breach of trust for those who were promised their sons and daughters would be cared for, let alone have an everyday life.”

Sherry Landis, CEO, The Arc of PA testified in favor of closure of two of the 4 state Intermediate Care Facilities (ICFs).  If people’s lives were not at stake, some of her comments and inconsistent attempts to answer questions could be comical.

When questioned how the non-profit that advocates for civil rights for folks can endorse saying all centers should be closed and hence taking away the civil rights of individuals and families who’ve made a decision that this is the best option for them, Ms. Landis answered that it has always been the mission of the Arc of PA to ensure the families and the individuals are included in the community.

“It has nothing to do with being a non-profit but it has everything to do with the people that are families and members of who we represent.  This is their desire, it’s not my desire Senator, it’s their desire ”

“They can’t be isolated if they are in a neighborhood”

Sherry Landis, CEO, The Arc of PA

Clearly, The Arc of PA does not represent the residents of Polk and White Haven Centers since it is not their desire to move – this is an action that is being imposed on them and violates their civil rights.

5:35.0 – 10:41 Dr. James Latronica

10:53 – 16:08  Celia Feinsten, Exec. Director, Temple Institute on Disabilities

16:20 – 19:50  Sherry Landis, CEO, The Arc of PA

19:59 – 29:14Carl Solano, Attorney, and Former Guardian

29:42 – 37:11 Gregory Smith, MS, President of White Haven Center Board of Trustees, Consultant and Behavioral and Health Care Services

40:10 – 43:37 Rep. James comments and question to doctor regarding healthcare outcomes and the response.

43:50  – 46:32  Senator Hutchinson questioning Sherry Landis, CEO, The Arc of PA

47:05 – 53:11  Senator Street asking question – Mr. Solano answered regarding previous situations with trying to find community homes. Senator Brooks asks follow up to Celia Feinsten and Sherry Landis

53:21 – 55:41  Rep Gerald Mullery questions trauma transfer – Dr. Latronica gives excellent answer

55:50 – 1:05:54 Rep Toohil has questions for panel regarding isolation in private settings –  Sherry Landis gives her response “to be isolated when living in neighborhood is difficult”

When questioned about the under trained staff and high turnover rate – a high rate which would mean the staff are not trained and experienced, Ms. Landis responded:

“under trained staff member?” I can’t answer for the providers – we’re not a provider but I can honestly say a provider is going to do an extremely good job and make sure their staff is trained if they are going to put the lives of their people in their hands? “

Senator Brooks wraps up with concerns regarding mortality rate and cherry picking data.

1:06.50  – 1:17.30 John Hirschauer, Fellow, National Review

1:17.40 – 1:26.30    Susan Jennings – Keeping Individuals with Intellectual Disabilities Safe (KIIDS)

1:26.45 – 1:27.19  Irene McCabe Says “Thank You” – sister of Polk resident

1:27.23  – 1:43.45    Hugh Dwyer, Exec Director, Voice of Reason (VOR)

  • 1:35.35 – 1:37.35- Appendix J for Federal Regulations and Group Homes are left up to the state.

1:43.38 – 1:47.50  Rep James has a question regarding Olmstead Act – answers provided by Hugo Dwyer, Susan Jennings and John Hirschauer

1:48.52 – 1:52.12  Bill Bailey, Psychological Support Specialist – Polk State Center

1:52.13 – 1:55.45  Maria Ferrey, Qualified Intellectual Disability Professional (QIDP),  Residential Services Supervisor, White Haven State Center

1:55.55  – 1:59.34  Darrin Spann, Assistant Director, AFSCME Council 13

1:59.42 – 2:01.38  Bill Hill, President AFSCME 2334 White Haven State Center,  impassioned speech about professional skills and community

2:01.50  – 2:04.36 Tammy Luce, Residential Service Aide, Polk State Center, President of AFSCME 1050

2:07.30  – 2:16.55 Randy Seitz, President/CEO Penn-Northwest Developmental Corporation – economic impact in the community if Polk Center closed

2:18.00 – 2:35.17 Teresa Miller, Secretary, Department of Human Services and Kristin Aherns, Deputy Secretary, Office of Developmental Programs

2:35.18 – 2:43.40 –  Senator John Yudichak  – questions Secretary Miller regarding community and closure, the department is taking the choice away from residents

2:46.46 – 2:53.27    Senator Lisa Baker questions the decision making process

2:53.35 – 2:56.55  Rep. R. Lee James – questions Teresa Miller, Secretary on resident choices

2:57.04  – 3:05.53   Rep.  Gerald Mullery – Criticism of decision is well deserved- report is due on November 1 to the Governor but the Secretary knows nothing about it or that data is even being collected.

3:05.54 -3:11.02  Senator Hutchinson questions Teresa Miller

I’m even more dismayed now about how this decision was made than I was when I walked in here.  Who made the decision? Senator Hutchinson

In closing,  do you think that it’s an accurate portrayal to talk about the declining populations at the state centers when admissions have virtually closed down?

Hit the Pause Button

A Hospital is not a Home

Disability Rights Washington and Shawn Murinko have filed suit against the Department of Social and Health Services and the Health Care Authority as an effort to prevent other developmentally disabled Washingtonians from getting stuck in hospitals for months or years at a time, instead of receiving supportive services in the community.
There is one very critical piece of information missing from this article and the suit (unless it is buried in something that I have not been able to see) and that is the option of utilizing the state-operated Residential Habilitation Centers (RHCs) as an intermediate care facility for those who do not need the acute medical care provided in the hospital.
DDA denies admission, even short term, crisis respite, to many who request this service.  DRW and other paid advocacy agencies deny the choices of those who desire these types of pedestrian-friendly communities – often referring to them as institutions and unaware of the true communities and choices provided to the residents who call the RHCs their homes.
In recent years there has been more of a push to look at the RHCs as temporary (intermediate) homes for those who need extra supports than can be provided in a community home (SOLA, Supported Living, group home or family home) but DDA continues to refuse to honor person-centered planning for those who choose the RHC.
This refusal to allow people who request admission to the RHC is even more puzzling given the extreme crisis we have in our community homes.   In the past couple of years, at least 2 contracted supported living agencies lost their contracts (SL Start and Aacres Spokane) due to negligence and death of at least 2 residents.  These agencies provided “support” services to over 200 people.
Another recent situation concerned Kevin Alspaugh.   Kevin is 27 years old and is autistic.  He had lived at Fircrest (an RHC in Shoreline) for several years about 4 years ago.  He stabilized and returned to his home community in Bellingham and did great in a group home for the past 4 years.  Kevin then had some issues related to medication changes and became extremely agitated and his group home dropped him off at St. Joseph’s Hospital in Bellingham and refused to provide care any longer.  Keven basically lived in the SECU (Secure Emergency Care Unit) for months in isolation because DDA would not honor his family’s multiple requests to have him return to Fircrest for stabilization.
At one point, the hospital let Kevin leave, barefoot and in scrubs, and did not notify his family (mother is guardian).  Kevin ran over 2 miles at rush hour and across extremely busy arterials and found his way back to his group home.  When he arrived there, the manager called Kevin’s mother to notify her.  Kevin had bloody blisters on his feet and was lucky that he did not get hit by a car.  The police came and returned him to the hospital and the hospital requested that he be taken to jail – they did not want to care for him.  They told Kevin’s mother (guardian) that he has discharged himself.
Currently,  Miriam Hamilton (age 19) is living in the ER in Spokane and has been there since Memorial day with no end in sight.  Her group home refuses to take her back.  There is another 16 year old at Seattle Children’s who is living in the ER/Psych unit off and on for months unable to be discharged home  – every attempt at discharge in the past several months has ended in an ambulance ride back to Children’s within a few minutes to hours.   There is an 18-year-old young man “living” at Harrison Hospital in Bremerton.
I’m sure there are many others too.  Hopefully, DDA is at least tracking those in the hospitals now but the fact that we have space and trained providers at state facilities that could appropriately care for these individuals without restraining or isolating them is unconscionable.
It’s more than shameful that DRW and other paid advocacy agencies are not addressing this issue – they seem to be more concerned about their political issues and denying the choices of people than actually trying to create solutions.
I would be more than glad to have a conversation with you or provide you with more information on this very complex situation and also provide information on viable options and choices that could provide stability for these individuals.
We can do much better.

Recovered Wages for Caregivers

The Seattle Office of Labor Standards recovers more than $120,000 in minimum wage violations for Seattle home care providers

Below is the press release from Seattle Office of Labor Standards.  I do think the headline is misleading – it is not Seattle home care providers but only the caregivers who were employed by Aacres, WA, LLC – a for-profit supported living agency.  

you work for peanuts.jpeg

There has been a history of violations with this company – many coming from not paying their employees appropriately and understaffing with a high staff turnover rate and lack of nurse delegation services.

Aacres,, WA LLC had at least $40,200.00 in civil fines for several violations of care between June 11, 2018 and October 17, 2018.  Many of these violations repeat violations cited in previous investigations in the past year.

 

Seattle – (January 25, 2019) – The Seattle Office of Labor Standards (“OLS”) announces a $120,050 settlement with Aacres WA, LLC, a company that provides supportive living services to people with developmental disabilities. The OLS investigation found that Aacres failed to pay the correct minimum wage for 377 employees who worked or attended trainings in Seattle throughout 2017.

Alexander Njuguna is one of the workers benefiting from the settlement. “I am excited that we will get the money that is owed to us. There are so many workers over the years who complained about the injustice we faced. Being compensated will be good for all of us and reminds us that if someone does you wrong, and the law is in your favor, there can be justice. I would like to emphasize that all employees have rights and an employee should not be afraid to raise concerns in fear of retaliation by the employer.”

SEIU 775 represents more than 45,000 long-term and home healthcare workers in Washington State and Montana. “Thousands of SEIU 775 caregivers working in Seattle care for individuals with developmental disabilities in home care and supported living. Our Union works closely with employers and advocates to ensure that caregivers are treated with dignity and respect. Yet, in some cases, caregivers like other workers, aren’t treated fairly and aren’t paid what they are owed,” said Sterling Harders, SEIU 775 President. “OLS’ work to hold Aacres accountable and their fight to ensure no employer gets away with wage theft has a positive impact not just on our city’s workers, but on the level of care received by people with disabilities.”

Aacres recently announced that it was closing its King County operations after the Washington State Department of Social and Health Services cited them for serious deficiencies in care standards. A sister company, SL Start & Associates, was also shut down for violations of care standards. Aacres is a subsidiary of Spokane-based Embassy Management which is owned by a nationwide company, U.S. Community Behavioral, and New York-based private equity firm, Bregal Partners.

Please visit the OLS website for more information on Seattle’s Minimum Wage Ordinance and other labor standards.

Below is an excerpt regarding the recent (April 2018) de-certification and closure of SL Start Supported Living Services:

SL Start and Aacres are both owned by the same company—Spokane-based Embassy Management. According to business filings in Washington and Delaware and news reports, Embassy Management is a subsidiary of U.S. Community Behavioral, which in turn is owned by Bregal Partners, a New York private equity firm.

Don Clintsman, the deputy assistant secretary of the Developmental Disabilities Administration, said he understood the concern about moving clients to a sister organization, but said the two entities are different.

“The expertise that Embassy has shown and that Aacres has shown in running a supported living program give us confidence the SL Start residents will get the right service,” Clintsman said.

Excuse me – what EXPERTISE did Aacres have in running a supported living program?

Were the violations that had been accumulating mean anything to DDA?

#Olmstead – get the real scoop

There has been a recent buzz on twitter and Facebook and probably other social media regarding a comment made by Mary Lazare, Principal Deputy Administrator for the U.S. Department of Health and Human Services’ Administration for Community Living,  at the recent Autism Society’s national conference.

The comments, which are only reported by 3rd party accounts, alleged that Ms. Lazare straight up came out in favor of re-institutionalization and in favor of segregation.  This is extremely hard to believe given the history of the organization.  Ms. Lazare did send an apology via Twitter in which she does recognize that Olmstead does give people the right to choices.

tweet @ACLgov

It is extremely disturbing to read in Disability Scoop that lawmakers are so uninformed about what Olmstead really says.  “Olmstead “has nothing to do with maintaining choice and everything to do with viewing the segregation of people with disabilities as a violation of Title II of the Americans with Disabilities Act,” wrote the three House lawmakers in their letter.”

Mary Lazare twitter response

It is obvious that these lawmakers have not taken the time to actually read Olmstead or they could never have gotten that opinion.  They are just taking the word of others who have misinterpreted Olmstead for years.

One reason false information is repeated and then taken as fact is because those who do not like what it says, block people who question them.  This group becomes insular in their ideology – they don’t want to have anyone raising questions against what they want to believe.  There is no voice of reason and common sense because these activists have blinders on and are hidebound.

Olmstead is about choice – not your choice, my choice but the choice of the individual.

 

 

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

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

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

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

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

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

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

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

Congregate is not the same as segregate

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

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

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

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

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

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

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