ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, March 2, 2016

I Am No Longer Speechless

I was speechless when I saw the memo below last night.  I am no longer speechless.

Didn't any of the many powerful addressees say, "This is a horrible response to a serious problem and proposal?"

__________

https://www.change.org/p/tell-als-association-improve-home-care-for-als-patients/u/15675167

Barbara Newhouse's memo to ALSA
staff

Catherine Scott
Murrieta, CA
Mar 1, 2016 — Below you will find the content of a memorandum Barbara Newhouse sent to her staff prior to responding to my first letter. In it, she once again demonstrates a blatant indifference to the urgent home care issues facing ALS patients and their families today. Talking points, concern for stakeholders and a dismissal of the petition’s social media presence…How does that help us? We simply cannot tolerate the leader of the nation’s largest ALS advocacy organization not putting our needs first on her list of priorities.

******* Beginning of Memorandum *******
MEMORANDUM
The ALS Association
DATE February 24, 2016
TO National Board of Trustees - Chairman’s Council - Board of Representatives - Chapter Executives - National Office Staff
FROM Barb Newhouse, President and CEO
SUBJECT Change.org Home Healthcare Petition

Many of you may have seen the petition on Change.org that is directed at me and The ALS Association, challenging us to improve home health care for patients. I am including some talking points in this memo should you receive any questions from concerned stakeholders. I am also including my personal email response to Catherine Scott, who started the petition, who is a person living with ALS.

We are not seeing a lot of traction on social media with this particular petition but do feel it is important for The Association to respond. Therefore, we will likely be posting a note in the comments section of the petition to communicate with those individuals who feel passionate about this issue.

If you have any questions, please contact Brian Frederick, Chief of Staff, bfrederick@alsa-national.org.

Response to Catherine Scott:
Dear Catherine,
I’ve read through each and every comment in your letter and agree with you wholeheartedly that people living with ALS are suffering and families are struggling. These are the reasons I accepted my position with The Association – to help people living with ALS and their families.
Please know that we strongly support policies that expand the availability of long-term care services, including both skilled and non-skilled home health care services. We have a long history of fighting for people living with ALS on this issue. As you may know, we championed the Community Living Assistance Services and Support (CLASS) Act to create a federal program to provide long-term care insurance, including access to home health services. The legislation was enacted into law as part of the Affordable Care Act. Unfortunately, the program ultimately was repealed because it was not financially sustainable. We are continuing to fight for greater access to long-term care services.
Please also know that we are creating new home health care educational and training materials and improving our existing ones – a process we will finalize in the next couple of months. In doing so, we’re working with our Chapters, other organizations, and home health agencies and partners. The purpose of these materials is to provide training and educational resources that can supplement clinic visits, provide information to family/friend caregivers, educate on self-management practices, and aid in decision-making process for patients and caregivers.
Does more need to be done? Absolutely. We are in this together. The ALS Association will continue to actively distribute educational resources, offer care/respite programs via our chapter network, and
lead policy efforts that result in even greater access to home health services for people with this disease.
I would welcome the opportunity to discuss these issues with you in greater detail whenever is convenient. In the meantime, thank you for your comments and concerns. We are here fighting for you, Anthony, and everyone else living with ALS.
Barb

Talking Points:
-We understand that the needs of patients and families—who are living with ALS—are staggeringly great. Through our network of 39 chapters nationwide, The ALS Association is proud to support a variety
of programs that aim to help.
-In the next two months, The Association will be releasing a portfolio of home health care educational materials that address the multitude of questions facing people living with ALS, their families and caregivers.
-The Association whole heartedly understands the urgency around home health care and affordability when it comes to fighting ALS. We will continue to support initiatives that will ensure people get the highest quality care they need, when and where they need it.

Public Policy and Home Health
-The Association strongly supports advancing policies that expand the availability of long-term care services including both skilled and non-skilled home health care services. We have made progress on a number of fronts including:
Establishing a presumption of service connection for ALS at the Department of Veterans Affairs, which enables veterans with ALS to access long-term care services;
Enacting the Lifespan Respite Care Act and securing nearly $20 million for the program which provides grants to states to improve access to respite care;
Eliminating the 24 month Medicare waiting period for people disabled with ALS so that they can access Medicare without waiting for two years before becoming eligible. ALS is the only disease for which
Congress has eliminated the waiting period;
Extending the exceptions process that people with ALS can use to exceed spending and utilization caps on physical therapy, occupational therapy and speech-language pathology services;
Supported efforts to expand the availability of Medicaid so that more people can access long-term care services;
Worked to ensure people with ALS have access to Medicare’s hospice benefit, which can help provide home health care;
Advocated with the Social Security Administration to create a presumptive disability ruling, which enables people with ALS who are eligible for Medicaid to automatically begin to receive Supplemental
Security Income (SSI) payments even before their SSI application has been approved; and
Championed the Community Living Assistance Services and Support (CLASS) Act to create a federal program to provide long-term care insurance, including access to home health services. The legislation
was enacted into law as part of the Affordable Care Act. Unfortunately the program ultimately was repealed because it was not financially sustainable.
-This year, The Association is working with Members of Congress to waive the 5-month waiting period for Social Security Disability Insurance (SSDI) for people with ALS. This will allow people with ALS to immediately receive both SSDI payments and Medicare as soon as their claim for benefits is approved, which can be in as little as two weeks.
-The Association recognizes that while these policies have helped more people with ALS access vital care as quickly as possible, we still have much more work to do in order to ensure people have access to the full spectrum of care and support they need, including to home health care. We are committed to working with you, Members of Congress, regulatory agencies and others to advance this important
issue.

Care Services/Home Care Education Program
-Currently, The Association is collaborating with subject matter experts in order to develop a portfolio of home health care educational materials that address the multitude of questions facing people living with ALS, their families and caregivers.
-The purpose of these materials is to provide training and educational resources that can be distributed in order to supplement clinic visits, provide information to family/friend caregivers, educate on self-management practices, and aid in decision-making process for patients and caregivers.
-Resources will include manuals, brochures, informational one-pagers, videos and other materials and we expect them to be finalized within the next two months

******* End of Memorandum *******


PLEASE SIGN & SHARE THE PETITION:
https://www.change.org/p/tell-als-association-improve-home-care-for-als-patients

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