Come October 1, Americans will be able to start enrolling in Affordable
Care Act (ACA, “ObamaCare”) health insurance programs, which will then
be implemented January 1st. Since health care policy is so complex, we
spoke with The Autistic Self-Advocacy Network‘s Ari Ne’eman about
specific advantages, opportunities, and sticking points of the ACA for
People with Disabilities. In addition, The Autistic Self Advocacy Network has just released a policy brief on the impact the Affordable Care Act is likely to have on people with intellectual and developmental disabilities and what advocates can do to
encourage state and federal policymakers to make the most of the law.

TPGA: What are ASAN’s primary concerns about how the ACA will affect
people with disabilities? Is there a significant component to how the
ACA will affect people with intellectual & developmental disabilities?


Ari Ne’eman: We view the Affordable Care Act as a significant
opportunity for people with disabilities, particularly people with
intellectual and developmental disabilities (I/DD). Most people with
I/DD have access to health insurance coverage through Medicare and
Medicaid — as a result, our main focus has been analyzing the impact of
ACA on the quality of that coverage as well as the potential that ACA
brings to facilitate access to private insurance for our community.

The Affordable Care Act’s most significant impact for people with
disabilities is the end to pre-existing condition discrimination, which
is huge. It’ll make it easier for the parts of our community that are
not insured to gain access to coverage. However, just as significant is
the insurance reforms that ACA mandates regarding benefits, access to
providers and affordability. The law also includes substantial new
options for states to take up regarding Medicaid home and
community-based services. All in all, we think the law could have a
major positive impact on people with disabilities, if properly implemented.

What would be some example of “properly implemented”?

That’s a great question. With a law of the size and scope of the ACA, a
lot of the implementation will depend on the decisions made by states
and the oversight provided by regulators. Already, we’re seeing
significant differences in the decisions states are making about whether
or not to expand Medicaid or set up their own health insurance
marketplace. Those types of decisions have an impact on the availability
and type of coverage available in those states.

One of the issues we covered in our policy brief is that the Department
of Health and Human Services (HHS) has decided to leave the decision
about what constitutes Essential Health Benefits — the minimum health
services all insurance plans must cover — to each state instead of
establishing a uniform federal definition. That means that a lot of
discretion is going to be left to state choices about what constitutes
the bare minimum a health insurance plan must include. Prior to that
decision, we in the advocacy community had hoped that a single federal
definition would be put in place.

Another area of interest is that ACA creates a number of opportunities
and incentives for states to go above and beyond what they’re required
to, particularly regarding services for people with disabilities. For
example, the law authorized the creation of the Community First Choice (CFC)
State Option, a new Medicaid option that offers states that eliminate
waiting lists for certain kinds of disability services a 6% enhanced
federal match for the costs of those services. Basically, this is the
federal government stating that if a state is willing to make certain
types of disability services an entitlement in that state, the feds will
pick up an additional 6% of the costs in return. The CFC and other
similar state options were some of the things that ASAN and other
disability rights groups, like National Council for Independent Living (NCIL) and ADAPT, advocated for during the
health reform debates several years ago

So, both for good and for bad, state policymakers are going to have a
lot of latitude in deciding how to implement this law. That’s why we
produced this policy brief, to give advocates the information and tools
they needed to push for the right steps to be taken.

Will ACA reforms affect long-term care and support costs for people with

Yes, in a number of ways. First, the law has already imposed a number of
reforms on insurance companies that should reduce costs for people with
disabilities and family members. It prohibits lifetime dollar value
limits on covering care and services, it has prohibited denying coverage
to children with pre-existing conditions and it has prohibited insurers
from arbitrarily rescinding coverage. In 2014, it will prohibit annual
limits on the dollar value of coverage and make it illegal to deny
coverage to anyone, adult or child, based on a pre-existing condition

The law also sets up a system of health insurance marketplaces that will
open for enrollment next month on October 1st, and will offer coverage
taking into effect on January 1st. These marketplaces will also offer
multiple opportunities for people with disabilities and family members
to reduce the cost of care. First, subsidies will be available to help
uninsured Americans purchase health coverage for people making between
100% and 400% of the federal poverty level. Second, the marketplaces
will make it easier to compare the cost and quality of different kinds
of health insurance plans, sort of like an Expedia-type website for
health insurance. Third, the marketplaces will sort each plan into
“metal levels” of Bronze, Silver, Gold or Platinum, indicating the
estimated percentage of the cost of care the plans will cover as
compared to your out of pocket costs. So, for example, if you have a
Platinum plan, it will be expected that your plan will likely cover
about 90% of the actuarial value of the cost of care. If you have a Gold
Plan, 80% and so on.

Finally, the new Medicaid state options will incentivize states to
expand Home and Community Based Services — the ACA sets up a number of
new options for states in this regard, including the Community First
Choice State Option, the State Balancing Incentive Program (for states
that have historically lagged behind in de-institutionalization) and the
re-authorization of the already highly successful Money Follows the Person program.

What is a Qualified Health Plan as defined by the ACA?

That’s a great question. To be included in the Marketplace, insurance
plans have to meet certain minimum requirements — this is called
becoming a Qualified Health Plan (QHP). The most commonly referred to is to
include certain Essential Health Benefits. As mentioned earlier, this is
something that states will have a lot of latitude to determine the
minimum requirements around, as long as they include benefits in each of
the ten categories set out by the law. However, becoming a QHP also
includes minimum requirements around provider network access (“How easy
is it for me to find a doctor or other service provider who will serve
me?”) and other quality assurance provisions.

ACA also has introduced a new broad based requirement on all insurance
companies, which took into effect last year. It’s called a Medical Loss
Ratio. What it means is that if an insurance company spends less than a
certain percentage of the premiums it receives on health care — 80% in
the individual market, 85% in the group market — it must refund its
customers until that ratio comes back into alignment. It’s already led
to many consumers receiving money back from their insurers.

What are some of the disability community’s concerns about Essential
Health Benefit Packages as defined and implemented under the ACA?

One of the biggest ones is to what degree habilitative services — things
like Occupational Therapy, Speech Pathology and a number of other
interventions — will be required within the Essential Health Benefits
package. The law instructs states to determine the Essential Health
Benefits package in relation to a state-selected benchmark plan —
essentially, states need to pick a plan from a series of options
provided by the federal government and then require all plans on the
Marketplace in relation to what is available in that plan. However,
habilitative services are generally not covered by most private
insurers. But the law requires their inclusion in the Essential Health
Benefits package, as they are one of the ten required benefit
categories. We feel the disability advocacy community in each state
needs to carefully monitor how their state manages that contradiction
and push for a robust habilitative services benefit.

So people with disabilities are still at risk of falling through the
cracks under the ACA and Medicaid expansion?

Regardless of what choices states make in implementation, the basic
minimum required under the ACA is going to be a vast improvement over
the status quo prior to the law’s passage. However, we want to make sure
that all potential mechanisms in the law to enhance the quality of
health care available for people with disabilities are utilized. That’s
going to mean putting pressure on state governments with respect to how
they choose to implement ACA, and pressure on federal regulators to
provide meaningful oversight. Just because something is better than what
we had before, doesn’t mean we can stop advocating for all of our needs
to be met.

What are the benefits of allowing people with disabilities who are Medicaid beneficiaries to
access Qualified Health Plan coverage from the newly established exchanges?

I think the biggest benefit for people with disabilities regarding
accessing the private insurance market is better access to providers.
Medicaid is a great health insurance program as far as it’s scope of
benefits, but it is far worse than private insurance when it comes to
the number of clinicians and other providers that will accept it. That’s
because Medicaid pays providers much less than both Medicare and private
insurance do. If we can offer people with disabilities greater access to
the private health insurance market, we can make it easier for people to
find a doctor and even pick from multiple options.

Why do people with disabilities need to pay particular attention to the
issue of provider adequacy?

We’ve put a lot of time and energy into ensuring that people have access
to health insurance, which is great — but it’s not very useful if people
still don’t have access to health care! Health insurance is a payment
mechanism. For it to work, you need to have providers that will be
willing to accept the payments and who are qualified to provide the
services you want from them. Whether we’re talking about the Medicaid
system and long term services and supports or the private insurance
market and acute care, we need to pay attention to provider access. It
is a critical and under-acknowledged area of public policy.

How does the ACA stand to benefit people with disabilities, in terms of

Health care and employment have always had a close inter-relationship.
Many people with disabilities who want to work and are able to find jobs
either don’t accept them or keep their wages lower than what they could
otherwise earn so that they don’t lose access to public health
insurance, eligibility for which is linked to income support programs
like Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). This is because as of the moment, our private health
insurance market makes it either extremely expensive or impossible to
get coverage if you have a disability. As of 2014, pre-existing
condition discrimination will end and that will change. We think it will
make it easier for people with disabilities to shift off of income
support and access the private insurance market.

That won’t be the end of our need for either income support or public
health insurance, however. The policy brief outlines a number of ways
that state policymakers can help offer hybrids of public and private
insurance coverage options for individuals who still require benefits
that are only available through Medicaid or who are not able to earn
enough to totally replace income support payments. We believe that this
part of our community should also have access to the expanded provider
networks available under the plans on the Marketplace.

So that expanded provider network access will vary by state?

Yes, particularly because different states may make different decisions
about how much access to the Marketplaces people who are on Medicaid
will have.

For example, we are urging states to utilize a long-standing state plan option called
Section 1905(a) to buy people with disabilities now on Medicaid health
insurance plans from the marketplaces and then provide wrap-around
coverage to basically have Medicaid cover everything that private
insurance doesn’t. We think this could be a Win-Win for everyone
involved. People with disabilities get health insurance coverage with
better access to providers, but also have Medicaid to cover the benefits
that private insurance doesn’t include, as well as pay for co-pays and
other cost-sharing present in private insurance but prohibited under
Medicaid. States get to spend less on acute care costs, because the ACA
makes it illegal for health insurance companies to charge people with
disabilities more for coverage. However, there’s no guarantee that
states will take that option – many may find it administratively complex
or may be reluctant to shift large numbers of people with disabilities
into the new Marketplace system, for fear that it will increase costs
for the general population.

So the decisions that get made by state policymakers will have a big
impact on whether or not people with disabilities get to make the most
of the opportunity offered by the ACA.

How can the Department of Health and Human Services help ensure that the ACA benefits people with disabilities?

Three things:

1) Give states the technical assistance necessary to make sure they use
Win-Win opportunities like expanding Medicaid and what we’re recommending around 1905(a). We
think this would benefit everyone involved, but it’s a new thing and
states are often afraid of new things, particularly when so much else is
changing around them.

2) Provide meaningful oversight on areas where states may be inclined to
cut corners, like with respect to meaningfully monitoring access to
providers in private insurance or the determination of what the minimum
Essential Health Benefits package will be. We need state policymakers to
know that if they don’t take into account the needs of people with
disabilities, the Feds will be looking over their shoulder and ready to
step in.

3) Don’t give away the farm on Medicaid flexibility. When the ACA was
challenged in the courts, the Supreme Court ruled in NFIB (National
Federation of Independent Businesses) v. Sebelius that it was mostly
constitutional — with the surprising exception of the provision that
required states to expand their Medicaid systems to cover childless
adults up to 133% of the federal poverty level. This turned what was
intended to be a mandatory part of the ACA into a state option. Now,
many states are bargaining with the federal government, saying that they
will take up the option if the feds give them flexibility regarding
other aspects of the Medicaid program, such as allowing them to require
greater cost-sharing from Medicaid beneficiaries or cut back on services
that were previously considered required. While we want states to take
up the Medicaid expansion, we think it’s important that the federal
government protect the integrity of the Medicaid program.

What sort of actions do disability advocates need to take, to ensure
that the ACA benefits people with disabilities to the fullest extent?

Talk to state policymakers, particularly insurance commissioners and
Medicaid directors, and pressure your Governor’s office and state
legislators to do the same. We need them to hear from you about the
importance of making the most of the ACA by doing things like coming up
with a strong definition of Essential Health Benefits and taking up new
Medicaid options like the Community First Choice state option. Many of
the people with decision-making power are incredibly busy, so the issues
that have the loudest and most capable constituencies are the ones that
get acted on. We need you to be a voice for meaningful implementation of
health reform in your state. This policy brief is designed to give you
the tools to make that easier for you to accomplish.

Thanks so much for having me, and I encourage your readers to sign up to
learn more about ASAN’s upcoming policy work by joining our mailing list
or becoming a member of ASAN. You can do both at