Amyotrophic Lateral Sclerosis
(ALS)
BILL PACK
SR.NSO
PARALYZED VETERANS OF AMERICA
ALS Lay Definition
 Amyotrophic lateral sclerosis (ALS) is the most common of
the five types of motor neuron disease. About 5 to 10% of
cases are directly inherited from a person's parents.
 ALS causes muscle weakness and muscle shrinking
(atrophy) throughout the body. Both the upper motor
neurons and the lower motor neurons die, making them
stop sending messages to the muscles. Unable to
function, the muscles gradually weaken and waste away
(atrophy). Eventually, the ability of the brain to start and
control voluntary movement is lost. However, even
patients in later stages of the disease may still have the
same intelligence, memory, and personality they had
before it started.
ALS Rates of Progression
Rapid 10% patients Life expectancy – less than 1 year
Average 80% patients Life expectancy – 3-5 years
Slow 10% patients Life expectancy – up to 10+ years
ALS and DVA
New ALS Regulations implemented Effective September 23, 2008
38 CFR 3.318 - Presumptive service connection for amyotrophic lateral
sclerosis.
 (a) Except as provided in paragraph (b) of this section, the
development of amyotrophic lateral sclerosis manifested at any time
after discharge or release from active military, naval, or air service is
sufficient to establish service connection for that disease.
 (b) Service connection will not be established under this section
 (1) If there is affirmative evidence that amyotrophic lateral sclerosis
was not incurred during or aggravated by active military, naval, or air
service
 (2) If there is affirmative evidence that amyotrophic lateral sclerosis is
due to the veteran's own willful misconduct or
 (3) If the veteran did not have active, continuous service of 90 days or
more
ALS and DVA
Federal Register, Vol. 76, No. 244, Tuesday, December 20,
2011 Rules and Regulations. Department of Veterans Affairs
Final Rule
SUMMARY: The Department of Veterans Affairs (VA) is
amending its Schedule for Rating Disabilities by revising the
disability evaluation criterion provided for amyotrophic lateral
sclerosis (ALS) to provide an evaluation of 100 percent for any
veteran with service connected ALS. This change is necessary
to adequately compensate veterans who suffer from this
progressive, untreatable, and fatal disease. This change is
intended to provide a total disability rating for any veteran with
service connected ALS.
Effective January 19, 2012
ALS-DVA and SAH Grant
Federal Register, Vol. 79, No. 157, Thursday, August 14, 2014
Rules and Regulations. Department of Veterans Affairs Final
Rule
SUMMARY: The Department of Veterans Affairs (VA) amended
by interim final rule its adjudication regulation regarding specially
adapted housing (SAH) to authorize automatic issuance of a
certificate of eligibility for SAH to all veterans and active-duty
service members with service-connected amyotrophic lateral
sclerosis (ALS) rated totally disabling under the VA Schedule for
Rating Disabilities. This document adopts as a final rule, without
change, the interim final rule published in the Federal Register
on December 3, 2013.
Effective August 14, 2014
ALS-DVA and Auto Grant
The Department of Veterans Affairs (VA) is amending its
adjudication regulation regarding certificates of eligibility for
financial assistance in the purchase of an automobile or other
conveyance and adaptive equipment. The amendment authorizes
automatic issuance of a certificate of eligibility for financial
assistance in the purchase of an automobile or other conveyance
and adaptive equipment to all veterans with service-connected
amyotrophic lateral sclerosis (ALS) and members of the Armed
Forces serving on active duty with ALS.
Effective February 25, 2015
New VA Form 21-4502, February 2015, block # 17 is checked for
ALS.
ALS CLAIM DEVELOPMENT










- VA F 21-22
- VA F 21-526 EZ
- VA F 21-686C
- VA F 21-674 (full time student)
- VA F 21-4502
- VA F 26-4555
- DD form 214 (certified)
- VA F 2680 (from ALS clinic)
- ALS DBQ
- VA F 21-0966 (faxed to GA/SEP)
North Carolina ALS Clinics/Chapter






- Duke University Medical Center ALS Clinic 919 668-2875
- Wake Forest Baptist Health Center ALS Clinic 336 716-2309
- Carolinas Medical Center ALS Clinic 704 355-0784
- UNC ALS Clinic 919 843-7857
- Greenville ALS Clinic 252 847-1779
- Jim “Catfish” Hunter Chapter 919 755-9001
ALS VA Medical Care










- Complete 10-10 EZ
- Request VA PCP
- Request PM&R Consult through PCP
- Rehab medicine for applicable appliances
- Request Home Base Primary Care
- Request Home Maker/Home Health Aid
- LTC (long term care)/Hospice Care (as applicable)
- Respite Care
- Dental Care
- Clothing Allowance (VA F 10-8678)
ALS and VA Healthcare
VHA Handbook 1101.07- July 7, 2014
This Veterans Health Administration (VHA) Handbook
establishes procedures for health care services to Veterans
with Amyotrophic Lateral Sclerosis (ALS).
This is a new VHA Handbook describing the essential
components and procedures of the ALS System of Care that
have been implemented by ALS care providers to ensure that
all enrolled Veterans have access to ALS care. Necessary
structural, procedural, and educational components for
consistent ALS services are described.
ALS and Home Care
 It is important that ALS veterans receive priority for needed home
health care.
 When looking at whether or not an ALS veteran is receiving enough
care it should be evaluated not just on hours but whether the care is
skilled or unskilled.
 It should be noted that VHA Handbook 1140.6 gives veterans no more
than 65% of what it would cost for the veteran to be placed in a nursing
facility.
 Any care not given between a certain number of hours at a facility and
this is due to budgeting constraints and we can further advocate for this
veteran.
 In addition VHA Handbook 1101.07 states that ALS veterans are
eligible for hospice care.
Additional Benefits










- Auto Grant $20,114.34
- Special Adaptive Housing $73,768 (effective 10/1/15)
- VA RH Life Insurance (VA F 29-4364 $10K)
- VA F 29- 0188 (for an add’l $30K)
- HISA Grant (VA F10-0103 $6800)
- Chapter 35 Education (VA F 22-5490)
- Champ VA (VA F 10-10d)
- Id Card Commissary/BX privileges/MWR
- NC Free DMV Tag (MVR33A)
- NC $45K property tax exemption (NCDVA 9)
ALS-DVA and Veterans Mortgage
Life Insurance (VMLI)
VMLI provides up to $200,000 mortgage life insurance and is
payable only to the mortgage holder (i.e., a bank or mortgage
lender), not to a beneficiary. The amount of coverage will equal the
amount of the mortgage still owed, but the maximum can never
exceed $200,000. VMLI is decreasing term insurance which
reduces as the mortgage balance declines. VMLI has no loan or
cash values and does not pay dividends.
Important Note: Due to the rapid progression of ALS in most
instances, it is possible a veteran can pass away before even using
the SAH Grant and subsequent VMLI. In these situations, it is
important for the veteran to use the grant even for a small minor
project because once this project is approved, VMLI is approved.
Reserve and National Guard
In addition to 38 U.S.C. § 101 (b) (2) which defines a
veteran as; “The term “veteran” means a person who
served in the active military, naval, or air service, and who
was discharged or released therefrom under conditions
other than dishonorable, we need to look at 38 U.S.C. §
101 (24) which states in part the following:
38 U.S.C. § 101 (24); “The term “active military, naval, or
air service” includes—” (C) any period of inactive duty
training during which the individual concerned was disabled
or died— (i) from an injury incurred or aggravated in line of
duty.”
Reserve and National Guard
If you can secure service connection for a compensable
disability for a member who only has ADT, the ADT
becomes active duty (AD) and the member meets the
definition of a veteran authorized by 38 U.S.C.
Therefore the veteran meets the requirements for
service connection for ALS provided for under 38 CFR §
3.318.
The most common disabilities incurred for the
aforementioned members are hearing loss and tinnitus.
PLS and DVA
Primary lateral sclerosis is a type of motor neuron disease
that causes muscle nerve cells to slowly break down, causing
weakness. PLS usually only affects upper neurons whereas
ALS affects both upper and lower motor neurons.
There are several medical treatises from renowned medical
facilities such as Johns Hopkins and the Mayo Clinic that
classify PLS as a type of or variant of ALS. Most physicians
will write a medical opinion supporting this and VA will grant
service connection.
Survivor Benefits









- DIC (VA F 21-534ez)
- Burial (VA F 21-530)
- Champ VA
- Chapter 35
- Estate Planning
- Durable POA
- Medical POA
- Advanced Directives (Living Will)
- Federal/State Cemetery
Amyotrophic Lateral Sclerosis
(ALS)
 Bill Pack
 336 251-0836
 williamp@pva.org