The ALS Association 2014 Clinical Conference Phoenix, AZ

1. Insurance and Benefits Counseling
as a Core Service for ALS Patients
ALSA Clinical Conference
Phoenix, AZ
November 7, 2014
Margie Ware, Care Services Coordinator, MA Chapter

2. Learning Objectives
• Understand the relationships among
Medicare, Medicaid and private insurance.
• Appreciate the impact of insurance coverage
on patient care, coverage of durable medical
equipment, home health and other services.
• Be able to identify at least one waiver
program that may help non-traditional
Medicaid populations obtain coverage.

3. Basics that we already know
• Medicare is Federal Health Insurance.
Coverage is provided to those who have
worked under the Social Security System.
• ALS patients under the age of 65 who have
earned 20 quarters in the last 10 years can
receive Medicare and SSDI in five months.
• Medicaid is partially funded by the Federal
government but administered by the states.

4. Which comes first, the chicken, the
egg or the Medicare?
• Patients, providers and other advisers need to
know which insurance is PRIMARY.
• If the patient is covered by EMPLOYER insurance
from a company that has 100 or more
employees, that coverage comes first.
• Medicaid is always the payer of last resort.
• Depending on the terms of the employer
insurance, it can potentially interfere with the
coverage for durable medical equipment or
impose large copays.

5. What isn’t covered by health
insurance?
• “Intermediate” and “custodial” care – most of
the kinds of care that our patients need.
• Only Medicaid will provide assistance with
bathing, dressing, toileting, feeding, etc.
known as ADLs (Activities of Daily Living).
• Many state programs limit Medicaid coverage
to those with lowest incomes (<100-300% of
poverty) and may have asset test
requirements.

6. How does Mass Health (Massachusetts
Medicaid) deal with this issue?
• Individuals who need assistance with two ADL’s
can qualify for a “Personal Care Attendant” (PCA)
in the home.
• Consumer-directed program. Consumer can hire
anyone of their choosing, except a spouse, or ask
an agency to provide a PCA.
• Agencies throughout the state are contracted to
do “skills assessments/trainings” to determine
how many hours of assistance a patient needs
per week.

7. So how can a disabled person qualify
for Mass Health?
• Income – Individuals/families with incomes under
133% of the poverty level (under 65) or 100% FPL
over 65; asset test for over 65.
• Extraordinary medical expense – “spenddown.”
State determines amount of medical
bills/expenses that must be shown within a six
month period. Based on family income.
• “Working Disabled” – those working for 10
hrs/week for at least $1/hour do not have to
meet the above requirements; rather they are
charged a premium based on their family income.

8. Are there similar programs in other
states?
• Yes. Each state designs its own waiver programs
and submits to Federal Government.
• Example: New Jersey offers MLTSS (Managed
Long-Term Services and Supports) and
New Jersey “Workability” for working
disabled. There is an asset test, but it does
not include IRAs which is very important.
• For more information, see:
https://www.disability.gov/

9. What additional programs exist for elders
(those 60 and older)?
• Home and Community Based Waiver.
• INDIVIDUAL (not family) must have income
under 300% of SSI rate. Must still meet asset
test (< $2K in liquid assets.)
• This program is available nationwide through
Aging Services Access Points (ASAPs).
• Easier for married persons to deal with asset
issues since transfers between spouses are
allowed.

10. What other programs may exist?
• “Money follows the Person” – individuals who
have been in institutional settings can contact
Options Counselors to see if the same amount
the state is spending on their care can be used
to allow them to live in the community in a
less-restrictive environment.

11. Why is familiarity with these programs
important for the Massachusetts Chapter?
• This has become a “niche” service for us. Two
Care Services Coordinators are certified SHIP
(State Health Insurance Program) counselors.
Our ability to provide this service generates
referrals from ALS clinics across the state.
• Insurance and benefits counseling provides us
with a “foot in the door” with patients and
families whose initial concerns center around
financial implications.

12. What are the barriers to acceptance?
• Consideration of Medicaid services has a lot in
common with wheelchairs, feeding tubes and bi-paps.
They are all things that patients “don’t
want to think about” until perhaps the window of
opportunity has passed.
• We emphasize timelines, ability to refuse the
service once accepted, and the fact that the
patient and family have been paying taxes all
their lives. This is not charity; it is a recognition
that they are in an unusual financial situation.

13. What are the National Implications?
• Affordable Care Act originally envisioned the
“CLASS Act” as a way to meet long-term
services and supports for disabled persons.
• Financial and policy considerations seem
overwhelming. There is a need to have a
cogent, reasoned, wide-ranging and sensitive
conversation about the way in which our
citizens and our society pay for “non-medical”
home care services.

14. QUESTIONS?
• Margie Ware, Care Services Coordinator
• ALS Association – MA Chapter
• 315 Norwood Park South, First Floor
• Norwood MA 02062
• 781 255 8884
• Margie.Ware@als-ma.org