Petitioning President & CEO, ALS Association Barbara Newhouse and 3 others

Create a National Home Health & Respite Care Grant Program for People Living with ALS

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Background:

A person diagnosed with Amyotrophic Lateral Sclerosis (ALS) will experience savagely relentless and permanent muscle loss of their voluntary muscles.  While the disease may initially start out differently for those affected, the inevitable end result is the same for all who choose to live long enough – complete paralysis.  What may begin with simply being physically clumsy or slurring words, quickly evolves into losing the ability to move any part of the body, breathe on one’s own, swallow and talk.  Ultimately for all, 24/7 care is required, particularly true if the person elects to have a tracheostomy and/or be placed on mechanical ventilation or assistance.

What does one do when faced with these daunting physical challenges and yet chooses to remain living at home?  For those who are fortunate enough to qualify for Medicaid or Veteran’s benefits, or have a long-term care policy, they receive home health benefits and are able to typically get by.  Others may have enough family and friends to provide some care, although they often quickly become emotionally, physically and financially exhausted, needing respite care relief.  For the rest, it’s a devastating struggle of epic proportions.  Some are forced into bankruptcy to qualify for Medicaid, while others choose to end their lives prematurely to prevent their families from being obliterated by the enormous financial hardship and burden.  They die to save their family’s hard-earned pension, children’s college fund and property.  It’s sickening what happens to these families, yet no one talks about it.  It’s a monumental failure of our society.  These families just don’t have the discretionary funds to pay for caregivers, which can run from $52,000 to $104,000 annually (50 hours per week x $20 per hour = $52,000 annually, assuming overtime doesn’t have to be considered - or - 100 hours per week x $20 per hour = $104,000 annually, assuming overtime doesn’t have to be considered).  How many of us could actually pay this much out of our own pockets?  Not many.  Even upper middle-class citizens would have great difficulty coming up with such an amount, and there are numerous cases of those who can’t.  Money should never, absolutely never, play any part in deciding whether to live or die.  It’s morally incomprehensible and unequivocally wrong.

The ALS Association (ALSA) can and must help.  They are the preeminent non-profit ALS organization in the United States, with chapters located throughout to serve the entire ALS community.  Their marketing and fundraising potential in the ALS marketplace is unrivaled, and they have publicly committed to patient care being in their core plan as a primary mission, as it rightfully should be.  The very lives of the people the ALS Association was formed to serve hang in the balance.  Until there is a treatment or cure for all people living with ALS, there is nothing more urgent than home health care.  As of the last financial statement published for the ALS Association for fiscal year ending January 31, 2017, their total unrestricted assets were reported at $82,712,789, and total net assets were $104,468,596.  Their financial position is strong.

Below is a carefully considered, achievable plan to provide home health and respite care grants nationwide to all eligible applicants.  While it is merely a drop in the bucket, it is a step in the right direction and will help so many.  It is anticipated event participation will grow substantially with the implementation of this direct care program, thereby increasing funds raised.  This could potentially offset the funds diverted for home health and respite care grants.

National Home Health & Respite Care Program for the ALS Association to implement:

  1. Create a national home health and respite care grant program to be implemented in every chapter, permanent in nature, with an effective start date of no later than the end of the 3rd quarter of the ALSA fiscal year ending January 31, 2018.  At the commencement of the program, funds from the specified sources will begin to be deposited and accrued.
  2. Evaluate grant applications and begin awarding grants, with an effective start date of the 2nd quarter of the ALSA fiscal year ending January 31, 2019.
  3. Ensure the program is consistent and fair for all ALS patients by implementing the exact same program in every ALSA chapter nationwide.
  4. Establish a separate budgetary account and unique account number in each chapter for deposits and withdrawals, specifically and solely for use for the home health and respite care grants.
  5. Funding will include a mandatory contribution from ALS Association National in the amount of $5 million in total per ALSA fiscal year quarter, with the first distribution occurring within one week of the initial launch of the program, which is scheduled to begin during the 3rd quarter of the ALSA fiscal year ending on January 31, 2018.  Each subsequent quarterly deposit shall occur within one week of the start of each quarter of the ALSA fiscal year.  The ALS Association National will determine what percentage to allocate to each chapter’s program by determining the number of living ALS patients each chapter serves, as compared with the total number of ALS patients served throughout all chapters in the United States.  Distributions from ALS Association National shall be in full, not incremental installments.  Additionally, a mandatory 7% allocation from all “Walk to Defeat ALS” and “Ride to Defeat ALS” gross proceeds will be allocated to each chapter’s respective home health and respite care program accounts, as well as private donations specifically earmarked for such.  Should this 7% mandatory contribution have a detrimental impact on a particular chapter’s operations, ALS Association National will waive the equivalent of this amount in the upward contribution from the chapter to ALS Association National.  Individuals or groups may also establish their own fundraising events for the specific purpose of funding this program, with the capacity to allocate the funds raised to any chapter nationwide. 
  6. Create a donation portal on the alsa.org website under each chapter, as well as on each chapter’s individual websites, which directs donations to each respective account.
  7. Market the program through chapter and national press releases, descriptive website information, email, social media and private solicitations.
  8. Actively solicit donations from private parties and organizations.  The responsibility for this task lies with each chapter’s leadership and fundraising arm, as well as ALS Association National’s leadership.
  9. ALS Association National will hire an independent oversight committee to evaluate the program’s performance and adherence to the guidelines and criteria established herein.  The committee will also send a survey to grant awardees to determine their level of satisfaction and any areas for improvement.  This shall be done at the close of each fiscal year, beginning with the close of the ALSA fiscal year ending January 31, 2019.  A public report shall be created by the committee no later than the end of the 1st quarter of each ALSA fiscal year.
  10. Reevaluate appropriate grant funding amounts each year based on the intake of funding and the residual balance at the end of each ALSA fiscal year.
  11. Each chapter will issue payment directly to a certified home health agency or an individual of the grant awardee’s choosing for either custodial type services or skilled nursing services.  No person awarded a grant shall pay anything out of their own pockets for subsequent reimbursement.  Should a certified home health provider or individual of the awardee’s choosing be unavailable in the awardee’s service area, the chapter will be responsible for contracting with a licensed home health aide, LVN or RN directly to provide the services the awardee requires.  In such cases, the chapter will pay these individuals directly.  Once again, no awardee will pay anything out of their own pocket for subsequent reimbursement.
  12. All donations to these accounts shall be tax-deductible to the donor.
  13. At the end of each fiscal year, each individual chapter will create and publish a public report indicating the total amount of donations received, the quantity of respite care grants issued, the quantity of home health grants issued, the total value of disbursements for each and the residual balance.
  14. Home health and respite care grants will be awarded for up to $7,500, depending on demonstrated need by the applicant.
  15. Applications received while funds are depleted shall be given priority consideration once funds become available again.
  16. Those registered with their chapter will receive notification of the program’s existence from support staff and via email.
  17. No funding for ALSA staff or administrative overhead, or any other expenses or fees, can be withdrawn from the contributions to these accounts.  The accounts are to be used for the express purpose of receiving donations and paying out grants for this program.

ALS Association National Home Health & Respite Care Program criteria:

  1. The applicant for whom the application is intended must have an official diagnosis of ALS or PLS, be registered with the chapter for which they are applying and live within the service area of the chapter to which they applied.  The applicant need not attend an ALS clinic to be eligible.
  2. There are no income criteria to be met.
  3. Qualifying applicants may receive only one grant award during each ALSA fiscal year, and the grant award may be used in any increment over a 12-month period from the award date.  Additionally, applicants may reapply and be awarded a grant during each ALSA fiscal year, which begins February 1 and ends January 31 each year.
  4. Applicant must live at a private residence, not a skilled nursing facility or similar, and have a home health or respite care need.  Applicant is also encouraged to attempt to secure additional benefits potentially available to them, including, but not limited to, Medicaid, Veteran’s benefits, Medicare home health services, private insurance, long-term care plans and hospice.  This often is difficult and time-consuming in nature, and there are often obstacles.  For example, a patient in most states cannot be placed on hospice if they have life-sustaining procedures or equipment, such as a tracheostomy or mechanical ventilation.  It is, therefore, an assumption of good faith that the applicant will attempt to secure such benefits to ensure grant funds are awarded to those most in need.
This petition will be delivered to:
  • President & CEO, ALS Association
    Barbara Newhouse
  • Executive Directors of every ALS Association chapter
  • Board of Directors of every ALS Association chapter
  • Board of Trustees of every ALS Association chapter


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