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What is the nature of the health resources and benefits available to…
What is the nature of the health resources and benefits available to veterans? What qualifications must be met to receive government disability in CT?
The Case: Ms. NR
Ms. NR served four years of active duty in the Army.
As a veteran Ms. NR may have additional options for services and support.
Ms. NR is an insurance adjuster and is often out of the office and on her feet.
She is worried about work moving forward as she continues to loose mobility. She wonders if she should ask her boss to modify her job duties. She wonders if her employer is obligated by law to make accommodations for her.
At her first visit with the Neuromuscular Care Clinic, the social worker suggests that she apply for government disability benefits. Ms. NR is confused as to why she needs to do this as she is covered by the American Disabilities Act (ADA) through work.
VA Health Benefits (4)
Veterans are eligible for VA health benefits if they served in active military, naval, or air service and did not separate under dishonorable conditions.
Ms. NR is eligible for VA health benefits.
The Veterans Helath Administration is an integrated health care system with more than 1,200 sites of care.
Enrollment in VA health care satisfies Affordable Care Act health coverage requirements and no add on insurance plans are needed.
Enrolled veterans have access to a medical package that include preventative, primary, and specialty care. It also includes coverage of prescriptions, mental health care, home health care, geriatrics and extended care, as well as coverage for medical equipment and prosthetics.
Most veterans qualify for health care services that are cost free, but some have to pay a copay for visits and prescriptions.
VA health care also covers breast and cervical cancer screenings, prenatal care, and maternity care coverage.
VA Disability Compensation (4)
Veterans with medical conditions, disabilities, or injuries that occurred or were aggravated during active service are able to qualify for VA disability compensation.
Ms. NR would likely qualify for VA disability benefits because there is an association between ALS and active service.
Veterans that qualify receive tax-free monthly benefits.
Government Disability in CT (5)
CT Disability Programs
Social Security Disability Insurance (SSDI): This program is for Americans who have previously worked but their medical condition makes it difficult for them to continue to work. You get paid based on the amount of income that you have previously earned. You are likely to qualify if you have worked and paid taxes for at least five of the last ten years.
Ms. NR should apply for SSDI based on her work history.
Supplemental Security Income (SSI): This program is for individuals with limited income and assets. Often individuals who have not worked enough to qualify for SSDI will qualify for SSI.
Veterans disability benefits: As mentioned before Ms. NR would likely be eligible for this program ALS has been associated with active time on duty.
Long term or short term private disability insurance: Employers offer private disability policies or individuals can purchase the policies directly from an insurance company. The payments from this type of policy are typically sixty percent of former paychecks.
Qualifications for SSDI in CT
Medical Qualifications
To medically qualify for SSDI you need to prove that your disability or medical conditions prevents you from working.
Your doctor also needs to claim that your condition is expected to last for at least another year or the rest of your life.
Ms. NR can apply through an expedited process since she has ALS which is considered a severe and terminal condition and is listed on the compassionate allowance list.
Technical Qualifications
You must be 66 years old or younger.
You need to have paid enough taxes to Social Security to meet SSA work credit requirements.
24.3% of disability benefit recipients in CT during 2022 had a musculoskeletal disorder
What supportive therapies are standard in the long term management and care of ALS?
Symptom Based Management of ALS
Respiratory Function Management (1)
Respiratory management should be discussed early in management of the disease.
After initial diagnosis, clinicians should ask patient's about future preferences for respiratory management. It is important to consider later choices such as tracheostomy or chronic ventilatory support early as they impact the overall care plan.
Pulmonary Testing
After diagnosis with ALS, patients should have serial respiratory function tests every three months.
Tests that are used are vital capacity (VC), maximal sniff inspiratory force (SNIF), and maximal inspiratory pressure (MIP).
Noninvasie positive pressure ventilation
Suggested for ALS patietns with respiratory insufficiency which is considered as a VC<50 % of predicted, orthopnea, SNIF< 40 cm, or MIP< -60 cm.
Invasive Mechanical Ventilation
Mean survival with invasive mechanical ventilation has found to be about 30 months.
Before invasive mechanical ventilation is used, there should be discussions with the patient about options to stop the ventilation.
For example, some patients want ventilation to be withdrawn if they are in a locked-in state where they are unable to communicate.
Speech Therapy & Communication (3)
Many ALS patients develop bulbar symptoms that lead to dysarthria and dysphagia during disease progression.
Speech therapy is a very valuable tool to help ALS patients who develop bulbar symptoms.
In late dysarthria stages, communication devices have proven more beneficial than speech therapy. Therefore, the developing robotic field is very important for ALS management.
Mobility (3)
Physical and Occupational Therapy
A commonly prescribed regimen for ALS patients are stretching and motion exercises including endurance and aerobic movement therapy.
Motor-assisted movement exercisers (MME) are used for patients with muscle stiffness or weakness. More than half of MME users have increased wellbeing and decreased muscle stiffness.
Occupational therapy focuses on daily function while considering the need for assistive devices and adaptive strategies for everyday life activities.
Robotics
There are many robotic tools that help ALS patients to remain independent.
One example is the My Spoon or Obi which helps ALS individuals with food intake.
There are robotic arms that can be mounted to a wheelchair that help with complex movements.
There are current efforts to create wearable robotics that are like an exoskeleton and provide support directly to the wearer.
Robotics can even be used to help with speech and communication for ALS individuals.
Nutritional Therapy (3)
Many studies around ALS individuals indicate weight loss or a decreased BMI as an adverse prognostic factor.
Numerous ALS individuals have weight loss between disease onset and diagnosis which is associated with reduced overall survival.
In ALS patients there are multiple factors that result in malnutrition and weight loss: reduced caloric intake due to dysphagia, hypermetabolism, medications resulting in intestinal problems, loss of appetite.
Malnutrition in ALS indiviudals leads to higher morbidity and mortality.
There are also other forms of symptom management. I focused on the management of the most major symptoms.
Other symptom management includes: fatigue, muscle spams, sialorrhea, pain, pseudobulbar affect, psychosocial aspects, sleep problems.
Multidisciplinary Care (1)
Multidisciplinary ALS Clinics
Multidisciplinary ALS clinics are important in the supportive management of the complex medical issues that are related to the disease.
The aim of these clinics is to increase survival, improve quality of life, and optimize health care for ALS patients.
ALS clinics are associated with six month increased survival and decreased time to gastrostomy and noninvasive ventilation (3).
They provide a multidisciplinary care team in one location that consists of: neurologists, physical therapists, occupational therapists, speech therapists, respiratory therapists, dietitians, social workers, and nursing care managers.
The multidisciplinary team is equipped to manage complex medical issues such as respiratory symptoms, dysarthria, dysphagia, psychosocial problems, functional decline, and nutritional needs.
Palliative Care
Palliative care does not need to be limited to end of life care. It should be integrated into the medical treatment of individuals with ALS.
When palliative care is used in the treatment of ALS is aims to address symptom burdens and stressors placed on the family and caregivers.
Palliative care is beginning to become a branch of the multidisciplinary team in many ALS clinics.
One study concluded that a palliative physician home visit in the last year of life was associated with a 0.65 (95% confidence interval 0.48-0.89) reduced adjusted odds ratio of dying in the hospital. It was also concluded that individuals with ALS who received a palliative home visit in the last year of life spent fewer days in the ICU. The study found that the majority of patients did not have access to palliative care services (2).
Hospice Care
Hospice care should be initiated within the last six months of life or less or whenever the goals of care has changed to comfort.
A social worker should be enlisted, if they have not already.
Advance directives should be in place at this point. If they have not been, they need to be established. The advance directives should continue to be revisited every six months.
The case: Ms. NR
She has slightly compromised lung function.
This can ben managed with symptom based management of ALS which is a supportive therapy.
The neurologist recommends that Ms. NR take Riluzole which is not a curative therapy.
Riluzole is one of the FDA approved medications to treat ALS. There are also supportive therapies that Ms. NR should receive which were mentioned in the case, but not explored in the companion to the case.
The neurologist also recommends a referral to the Neuromuscular Care Center at the local hospital. Here she is able to receive total care including medical care, physical therapy, and special equipment to help her remain independent.
The care team is a multidisciplinary ALS clinic and has many of the specialists that I listed under the multidisciplinary care section.
At one of her visits they discuss advance directives and health care representatives which is an important part of care and planning.
Sources
Galvez-Jimenez N, Quinn C. Symptom-based management of amyotrophic lateral sclerosis. UpToDate. 2023.
https://www-uptodate-com.online.uchc.edu/contents/symptom-based-management-of-amyotrophic-lateral-sclerosis?search=ALS%20supportive%20therapies&source=search_result&selectedTitle=3~150&usage_type=default&display_rank=3#H4
Zwicker J, Qureshi D, Talarico R, Bourque P, Scott M, Chin-Yee N, Tanuseputro P. Dying of amyotrophic lateral sclerosis: Health care use and cost in the last year of life. Neurology. 2019 Dec 3;93(23):e2083-e2093. doi: 10.1212/WNL.0000000000008582. Epub 2019 Oct 31. PMID: 31672715.
Tzeplaeff L, Wilfling S, Requardt MV, Herdick M. Current State and Future Directions in the Therapy of ALS. Cells. 2023; 12(11):1523.
https://doi.org/10.3390/cells12111523
Choose VA. US Department of Veterans Affairs.
https://www.choose.va.gov/health
Jakab, J. Connecticut Dsiability Benefits: How to Qualify, Apply, and Get Approved. Atticus, Mar 2023.
https://www.atticus.com/advice/disability-help-by-state/connecticut-disability-benefits