Amyotrophic Lateral SclerosisAmyotrophic Lateral Sclerosis(ALS)(ALS)

BILL PACKBILL PACKSR.NSOSR.NSO

PARALYZED VETERANS OF AMERICAPARALYZED VETERANS OF AMERICA

ALS Lay DefinitionALS Lay Definition

Amyotrophic lateral sclerosis (ALS) is the most common of Amyotrophic lateral sclerosis (ALS) is the most common of the five types of motor neuron disease. About 5 to 10% of the five types of motor neuron disease. About 5 to 10% of cases are directly inherited from a person's parents.cases are directly inherited from a person's parents.

ALS causes muscle weakness and muscle shrinking ALS causes muscle weakness and muscle shrinking (atrophy) throughout the body. Both the upper motor (atrophy) throughout the body. Both the upper motor neurons and the lower motor neurons die, making them neurons and the lower motor neurons die, making them stop sending messages to the muscles. Unable to stop sending messages to the muscles. Unable to function, the muscles gradually weaken and waste away function, the muscles gradually weaken and waste away (atrophy). Eventually, the ability of the brain to start and (atrophy). Eventually, the ability of the brain to start and control voluntary movement is lost. However, even control voluntary movement is lost. However, even patients in later stages of the disease may still have the patients in later stages of the disease may still have the same intelligence, memory, and personality they had same intelligence, memory, and personality they had before it started.before it started.

ALS Rates of ProgressionALS 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 DVAALS and DVANew ALS Regulations implemented Effective September 23, 2008New ALS Regulations implemented Effective September 23, 2008

38 CFR 3.318 - Presumptive service connection for amyotrophic lateral 38 CFR 3.318 - Presumptive service connection for amyotrophic lateral sclerosis.sclerosis.

(a)(a) Except as provided in paragraph (b) of this section, the Except as provided in paragraph (b) of this section, the development of amyotrophic lateral sclerosis manifested at any time development of amyotrophic lateral sclerosis manifested at any time after discharge or release from active military, naval, or air service is after discharge or release from active military, naval, or air service is sufficient to establish service connection for that disease. sufficient to establish service connection for that disease.

(b)(b) Service connection will not be established under this section Service connection will not be established under this section

(1)(1) If there is affirmative evidence that amyotrophic lateral sclerosis If there is affirmative evidence that amyotrophic lateral sclerosis was not incurred during or aggravated by active military, naval, or air was not incurred during or aggravated by active military, naval, or air serviceservice

(2)(2) If there is affirmative evidence that amyotrophic lateral sclerosis is If there is affirmative evidence that amyotrophic lateral sclerosis is due to the veteran's own willful misconduct or due to the veteran's own willful misconduct or

(3)(3) If the veteran did not have active, continuous service of 90 days or If the veteran did not have active, continuous service of 90 days or moremore

ALS and DVAALS 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 GrantALS-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 GrantALS-DVA and Auto Grant

The Department of Veterans Affairs (VA) is amending its The Department of Veterans Affairs (VA) is amending its adjudication regulation regarding certificates of eligibility for adjudication regulation regarding certificates of eligibility for financial assistance in the purchase of an automobile or other financial assistance in the purchase of an automobile or other conveyance and adaptive equipment. The amendment authorizes conveyance and adaptive equipment. The amendment authorizes automatic issuance of a certificate of eligibility for financial automatic issuance of a certificate of eligibility for financial assistance in the purchase of an automobile or other conveyance assistance in the purchase of an automobile or other conveyance and adaptive equipment to all veterans with service-connected and adaptive equipment to all veterans with service-connected amyotrophic lateral sclerosis (ALS) and members of the Armed amyotrophic lateral sclerosis (ALS) and members of the Armed Forces serving on active duty with ALS.Forces serving on active duty with ALS.

Effective February 25, 2015Effective February 25, 2015

New VA Form 21-4502, February 2015, block # 17 is checked for New VA Form 21-4502, February 2015, block # 17 is checked for ALS.ALS.

ALS CLAIM DEVELOPMENTALS 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/ChapterNorth Carolina ALS Clinics/Chapter

- Duke University Medical Center ALS Clinic 919 668-2875- Duke University Medical Center ALS Clinic 919 668-2875 - Wake Forest Baptist Health Center ALS Clinic 336 716-2309- Wake Forest Baptist Health Center ALS Clinic 336 716-2309 - Carolinas Medical Center ALS Clinic 704 355-0784- Carolinas Medical Center ALS Clinic 704 355-0784 - UNC ALS Clinic 919 843-7857- UNC ALS Clinic 919 843-7857 - Greenville ALS Clinic 252 847-1779- Greenville ALS Clinic 252 847-1779 - Jim “Catfish” Hunter Chapter 919 755-9001- Jim “Catfish” Hunter Chapter 919 755-9001

ALS VA Medical CareALS VA Medical Care

- Complete 10-10 EZ- Complete 10-10 EZ - Request VA PCP- Request VA PCP - Request PM&R Consult through PCP- Request PM&R Consult through PCP - Rehab medicine for applicable appliances- Rehab medicine for applicable appliances - Request Home Base Primary Care - Request Home Base Primary Care - Request Home Maker/Home Health Aid - Request Home Maker/Home Health Aid - LTC (long term care)/Hospice Care - LTC (long term care)/Hospice Care (as applicable)(as applicable)

- Respite Care- Respite Care - Dental Care- Dental Care - Clothing Allowance (VA F 10-8678)- Clothing Allowance (VA F 10-8678)

ALS and VA HealthcareALS 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 CareALS and Home Care

It is important that ALS veterans receive priority for needed home It is important that ALS veterans receive priority for needed home health care.health care.

When looking at whether or not an ALS veteran is receiving enough 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 care it should be evaluated not just on hours but whether the care is skilled or unskilled.skilled or unskilled.

It should be noted that VHA Handbook 1140.6 gives veterans no more 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 than 65% of what it would cost for the veteran to be placed in a nursing facility.facility.

Any care not given between a certain number of hours at a facility and 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 is due to budgeting constraints and we can further advocate for this veteran.this veteran.

In addition VHA Handbook 1101.07 states that ALS veterans are In addition VHA Handbook 1101.07 states that ALS veterans are eligible for hospice care.eligible for hospice care.

Additional BenefitsAdditional Benefits

- Auto Grant $20,114.34- Auto Grant $20,114.34 - Special Adaptive Housing $73,768 (effective 10/1/15)- Special Adaptive Housing $73,768 (effective 10/1/15) - VA RH Life Insurance (VA F 29-4364 $10K)- VA RH Life Insurance (VA F 29-4364 $10K) - VA F 29-- VA F 29- 0188 (for an add’l $30K)0188 (for an add’l $30K) - HISA Grant (VA F10-0103 $6800)- HISA Grant (VA F10-0103 $6800) - Chapter 35 Education (VA F 22-5490)- Chapter 35 Education (VA F 22-5490) - Champ VA (VA F 10-10d)- Champ VA (VA F 10-10d) - Id Card Commissary/BX privileges/MWR- Id Card Commissary/BX privileges/MWR - NC Free DMV Tag (MVR33A)- NC Free DMV Tag (MVR33A) - NC $45K property tax exemption (NCDVA 9)- NC $45K property tax exemption (NCDVA 9)

ALS-DVA and Veterans Mortgage ALS-DVA and Veterans Mortgage Life Insurance (VMLI)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 GuardReserve and National Guard

In addition to 38 U.S.C. § 101 (b) (2) which defines a In addition to 38 U.S.C. § 101 (b) (2) which defines a veteran as;veteran as; “ “The term “veteran” means a person who The term “veteran” means a person who served in the active military, naval, or air service, and who served in the active military, naval, or air service, and who was discharged or released therefrom under conditions was discharged or released therefrom under conditions other than dishonorable, we need to look at 38 U.S.C. § other than dishonorable, we need to look at 38 U.S.C. § 101 (24) which states in part the following:101 (24) which states in part the following:

38 U.S.C. § 101 (24); “The term “active military, naval, or 38 U.S.C. § 101 (24); “The term “active military, naval, or air service” includes—” (C) any period of inactive duty air service” includes—” (C) any period of inactive duty training during which the individual concerned was disabled training during which the individual concerned was disabled or died— (i) from an injury incurred or aggravated in line of or died— (i) from an injury incurred or aggravated in line of duty.”duty.”

Reserve and National GuardReserve and National Guard

If you can secure service connection for a compensable If you can secure service connection for a compensable disability for a member who only has ADT, the ADT disability for a member who only has ADT, the ADT becomes active duty (AD) and the member meets the becomes active duty (AD) and the member meets the definition of a veteran authorized by 38 U.S.C. definition of a veteran authorized by 38 U.S.C. Therefore the veteran meets the requirements for Therefore the veteran meets the requirements for service connection for ALS provided for under 38 CFR § service connection for ALS provided for under 38 CFR § 3.318. 3.318.

The most common disabilities incurred for the The most common disabilities incurred for the aforementioned members are hearing loss and tinnitus.aforementioned members are hearing loss and tinnitus.

PLS and DVAPLS and DVA

Primary lateral sclerosis is a type of motor neuron disease Primary lateral sclerosis is a type of motor neuron disease that causes muscle nerve cells to slowly break down, causing that causes muscle nerve cells to slowly break down, causing weakness. PLS usually only affects upper neurons whereas weakness. PLS usually only affects upper neurons whereas ALS affects both upper and lower motor neurons.ALS affects both upper and lower motor neurons.

There are several medical treatises from renowned medical There are several medical treatises from renowned medical facilities such as Johns Hopkins and the Mayo Clinic that facilities such as Johns Hopkins and the Mayo Clinic that classify PLS as a type of or variant of ALS. Most physicians classify PLS as a type of or variant of ALS. Most physicians will write a medical opinion supporting this and VA will grant will write a medical opinion supporting this and VA will grant service connection.service connection.

Survivor BenefitsSurvivor Benefits

- DIC (VA F 21-534ez)- DIC (VA F 21-534ez) - Burial (VA F 21-530)- Burial (VA F 21-530) - Champ VA- Champ VA - Chapter 35- Chapter 35 - Estate Planning- Estate Planning - Durable POA- Durable POA - Medical POA- Medical POA - Advanced Directives (Living Will)- Advanced Directives (Living Will) - Federal/State Cemetery- Federal/State Cemetery

Amyotrophic Lateral Sclerosis Amyotrophic Lateral Sclerosis (ALS)(ALS)

Bill PackBill Pack 336 251-0836336 251-0836 williamp@pva.orgwilliamp@pva.org