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Summer 2024

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Empowering Independence!

CLW Quarterly Newsletter

Welcome to the CLW Summer Newsletter!


Stay up to date with CLW's Events, Advocacy Efforts and Workshops! We are so excited for another summer full of events and being able to all our consumers and friends out in the community! Make sure to follow our Facebook Page and CLW's Calendar on our website to catch us out in the community.


We must urge legislators to oppose

the Single Assessment Entity RFR

 

By Meg Coffin, CEO

The Executive Office of Health and Human Services (EOHHS) recently released a Request for Responses (RFR) looking to award a contract to a Single Assessment Entity.


This single entity will conduct clinical evaluations for over 240,000 elderly and disabled individuals across Massachusetts covered by numerous Mass Health-funded programs, enabling these individuals to continue living independently in their communities.

Advocates across the state strongly oppose this move. Currently, these evaluations are largely conducted by community-based organizations such as Aging Service Access Points (ASAPs), Independent Living Centers (ILCs), Group Adult Foster Care, and Adult Foster Care Providers. These organizations send nurses to recipients’ homes

at least once a year to assess their needs for Long-Term Services and Supports (LTSS).


They also manage the complicated assessments and approval requirements before submitting them to MassHealth Optum for determination of services. Members may then choose to appeal these determinations with support

from the assessments of the community- based nurses.


The programs that will be impacted by this change are adult foster care, group adult foster care, personal care

management, day habilitation, adult day health, senior care options, PACE and OneCare.


EOHHS released this RFR without consulting with any of the providers or consumers who currently utilize these

services. The intent is to streamline the onboarding process and lessen the confusion about where to find services.


Massachusetts has long been the beacon for providing a variety of long-term services and supports that are

looked at with envy by my colleagues in other states. Now, instead of continuing to be an innovative leader,


Massachusetts is looking to follow what has been implemented in other states with disastrous results like Pennsylvania, New York, and North Carolina. What we have been told by our colleagues in other states is that wait times and confusion have increased, incorrect information is being provided and, in many cases, services are being cut. This is a prime opportunity for a large private equity firm or healthcare system to take over and medicalize what have been consumer-directed and consumer choice programs.


As advocates, we are not saying there is no room for improvement and simplification. The LTSS structure in

Massachusetts is complex and can be confusing to navigate. Often, the complexities are caused by the contractual

regulations set by the very agency,


EOHHS, that is now looking to remove all clinical services from community-based agencies and place them in one

large, potentially for-profit, entity.


EOHHS must collaborate with the providers that have been working with these programs for years. Invest in the

current system of providers to streamline our procedures, as it has streamlined procedures for this new entity in

the RFR. Adding yet another entity in the mix will only be more confusing for those we work with.


In addition, this will cause many clinical and administrative staff in these community-based agencies to lose their jobs.


The state has been at the forefront of the No Wrong Door approach with Options Counseling and Mass Options.

This allows individuals to contact any ILC or ASAP and receive information on the multitude of options available to

them.


As community-based providers, we know the individuals we work with daily and the services available to them.

Do not take away their choice and options with this change.


EOHHS has slowed the process due to the concerns raised by those impacted, but they intend to move forward.

As advocates, we feel this initiative needs to be stopped. This will disrupt over 40 years of services we have been

providing and will have no impact on the issues EOHHS is trying to solve.


Plese urge your legislator to tell EOHHS to work with the consumers using these services and the agencies currently providing them to implement innovative and lasting changes that will have a positive impact and resolve the issues.

Stay Up to Date with CLW!

Advocacy Efforts


Tell Massachusetts that we need accessible housing!


Massachusetts' is making their 5 year housing plan and wants input from you through a survey


Even though the questions in the survey do not directly ask, use this as an opportunity to tell your personal housing story


Fill it out now!

https://forms.office.com/pages/responsepage.aspx?id=Fh2GPrdIDkqYBowE2Bt7Km7hppyuvMVHtXKFHq406N1UMUFERFA0VVYxOFlRUTFDN0tHOFRGS1hPSC4u



PCA Rally

Great turnout at the CLW's Personal Care Attendant (PCA) rally!



Rep O'Day and Senator Kennedy spoke their support to maintain PCA eligibility in FY2025 for all PCA consumers and future PCA consumers that would qualify under FY 2024 rules


Together we are making a difference!




Interested in more advocacy email CLW's community organizer Benji Kemper at bkemper@centerlw.org


 

Upcoming Events


June 8th- Spring into Justice Fair

June 15th- Leominster Summer Stroll July 8th- WCAC Community Clinic

August 5th- WCAC Community Clinic

August 10th- Worcester Public Library Block Party

Stay tuned for Out to Lunch Date coming soon!


TAP and Pre-ETS have a monthly calendar that is added to the CLW website and social media platforms at the beginning of every month.

CLW News


DHILS provides a "What's Up Newsletter" that can also be found here:

What's Up Newsletter


The CLW Calendar is consistently being updated as we add more events. Check out the CLW Calendar on our web page here: CLW Calendar




Success Story

PCA Consumer:



The nurse, in reviewing Ayden's past evaluation before calling to schedule his reevaluation read Ayden was very complex and was totally dependent with all ADL’s & IADLs. She had not seen Ayden before so this visit would be the first time meeting him. His dad told her on the phone “what until you see him, he can do ….” 


Ayden was a normal functioning teen and suffered a severe seizure about 3 years ago while at his job. (17 years old) He required neck surgery from the fall. He lost all functional abilities including his speech. His parents advocated for all his needs; they had many doctors visits with unexplained answers to what happened to their son. They were known to 28 Neurologists throughout Boston. Ayden was undiagnosed with his neurological status for quite some time -being epileptic to not being epileptic. He was on /off seizures meds. He was diagnosed with Pott’s Syndrome a disorder that causes postural orthostatic tachycardia. The answer to why he was always dizzy, unsteady and had poor vision. He was also diagnosed with Functional Neurological Disorder -episodes that resemble seizures, extra movements, tremors, and memory problems. It disrupts the normal pathways for speaking, moving, walking and how you think. 


Well, here’s the best news….

Ayden’s parents kept advocating for answers and more therapy. They found an amazing physical, occupational and speech team at Emerson Hospital last summer 2023. He went to extensive therapy 3-5 days a week with carryover at home, provided by mom and dad. As the nurse met with them, she could not believe Ayden’s presence and function when she entered their home. He greeted her when she arrived. He had been nonverbal & a non-ambulatory last year.


He is now able to perform many tasks and verbalize his needs and wants. He is attending college 2-3 days a week. He has made an amazing improvement with his family’s dedication. They told the nurse they couldn’t have done it without the PCA program . They will never forget the day the Skills Trainer came to do their intake. They are so thankful. Although they are still hesitant about letting Ayden do certain things as a normal 20-year-old should. They pray every day he doesn’t relapse He still requires assistance and is learning to be patient with people being overbearing.


Ayden’s final words to the nurse when finishing his reevaluation visit were:

“My Life Has Color in it Now”. The nurse started to cry as well as his parents. 


Again, a great success for our consumer due to the PCA program and services. 


 


Please reach out if you would like to be featured in our next newsletter success story!

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