In researching ways the ACA will impact our industry and clients we came across this informative interview with Ari Ne’eman conducted by Thinking Person’s Guide to Autism.  Ari Ne’eman is an American autism rights activist who co-founded the Autistic Self Advocacy Network in 2006. On December 16, 2009, President Barack Obama announced that Ari Ne’eman would be appointed to the National Council on Disability.

Beginning 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.

Q: 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: 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.

 

Q: What would be some example of “properly implemented”?

Ari: 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.

Q: Will ACA reforms affect long-term care and support costs for people with disabilities?

Ari: 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 discrimination.

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.

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

Ari: 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.

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

Ari: 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.

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

Ari: 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.

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

Ari: 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.

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

Ari: 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.

Q: How does the ACA stand to benefit people with disabilities, in terms of employment?

Ari: 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.

 

Q: So that expanded provider network access will vary by state?

Ari: 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.

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

Ari: 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.

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

Ari: 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 www.autisticadvocacy.org. Posted by Shannon Des Roches Rosa on Wednesday, September 18, 2013

Interview via Thinking Person’s Guide to Autism