Of Counsel
While this was a victory for disability advocates, we need to
understand that we may have won this battle, but the war
against critically needed supports and services continues.
Speaker Paul Ryan acknowledged that he did not have the votes
to pass the AHCA. Families/advocates need to understand it
was pulled simply because members of the Freedom Caucus
(the most conservative forces in Congress) did not feel the cuts
and rollback in services were deep enough to allow them to
vote for the bill. On the other end of the spectrum, Peter Berns,
CEO of The Arc, said, “This bill showed a callous and dangerous
disregard for the well-being of people with disabilities and those
with complex medical needs.”
Advocates are bracing themselves for continued attacks over
the next two years on community-based supports provided to
individuals. The GOP proposal to repeal the Affordable Care
Act (aka ACA or ObamaCare) and replace it with the American
Health Care Act (aka AHCA, RyanCare or TrumpCare) was
only the first volley fired against our lifeline of services. We have
won this battle, but the war is not over! Since the early 1970s, we
have gradually increased the help that persons with disabilities
and their families receive from the federal government. There
were a few steps backward under the Reagan and George W.
Bush administrations, but for the most part, we made progress
chipping away at the institutional bias in federal programs. We
expanded supports to those families who wanted to keep their
special needs child at home and live a more normal life within
the community.
The progress from 1970 to 2016 has been significant. For the
first time in my 50 years as an advocate, I fear the loss of many
of the gains we have made and a slipping back to the family
being on their own with little expectation of help from the
federal government. Under a GOP-controlled House, Senate
and White House, we see the beginning of proposals to roll
back funding for education, housing assistance programs,
nutrition programs and Medicaid. My goal in writing this article
is to educate families on the threat that faces us. Knowledge is
power, and the more informed we are of what changes are being
proposed, the more effective we can be in blocking attempts
to tear down years of hard-fought gains in the fields of special
education, health care, community supports, nutrition and
housing.
My fears are not just my own but shared by numerous advocacy
groups and state agencies. A headline in the March 25, 2017,
Boston Globe read, “MassHealth Can Breathe a Sigh of Relief –
for Now.” Had the American Health Care Act passed, it would
have changed Medicaid as we know it. This bill introduced a
dramatic change in funding, from matching grants to assist
states in paying for the actual cost of providing Medicaid,
and Medicaid waiver services to a per capita formula. The per
capita reimbursement will completely undermine the Medicaid
program and transfer the burden of providing adequate health
services and community-based support services to the states
and eventually to the individuals who need these services,
through possible copays or loss of eligibility entirely.
Up until now, Medicaid has been an entitlement benefit funded
with matching state and federal funds. If you met the financial
and program criteria, you received the services and the cost
of providing those services was split between the state and the
federal governments. Under a Medicaid Cap funding formula,
the federal government sets a limit on how much it reimburses
the state for each person served. Rather than pay a percentage
of the actual costs, it would pay a fixed amount. If the actual
cost of care is higher than that, the state will have to make up
the difference or, in the alternative, decrease services. Nicole
Jorwic from The Arc said, “Let there be no doubt about it caps mean cuts. This will lead to cuts in services and longer
waiting lists.” We will continue to be at risk of losing home- and
community-based services, coverage for mental health services,
personal care assistance, rehabilitative services, prescription
drug assistance, respite care, and other benefits if the AHCA is
reintroduced and replaces the ACA.
Other less known attacks on the gains we have made over the
past 46 years include a little-known bill, the Protecting Access
to Care Act of 2017. This proposed legislation (2017 H.R.1215)
limits damages to $250,000 for non-economic loss due to
medical malpractice. This cap of $250,000 applies even if a
parent loses a child, an elder is harmed in a nursing home or
a family breadwinner is permanently disabled due to reckless
medical care. Patient safety has decreased in those states, such as
Texas, that have passed similar legislation. This cap on damages
gives medical providers a license to be careless, knowing that
their liability is greatly reduced.
In the area of education, we have a Secretary of Education,
Betsy DeVos, who appears to have little awareness of the
Individuals with Disabilities Education Act (IDEA). During her
confirmation hearings she indicated she would leave it up to the
states to determine if they were meeting the needs of disabled
students. More recently, Ms. DeVos made statements critical
of the free breakfast and lunch programs offered in the public
schools to children who meet the low-income guidelines for
these programs. These programs were implemented in the early
’70s due to overwhelming research that showed that without
proper nutrition, students could not learn. These programs
play an integral role in providing children with an appropriate
education. The nutrition programs offered in the schools were
fought for by The Arc as a result of the studies that show 70%
of students previously labeled as intellectually disabled (ID)
were suffering from malnutrition. When children received
adequate nutrition, their so-called ID disappeared, lowering
the number of students labeled as ID. Such programs have been
an economical way of reducing the costs of special education.
We can pay pennies for nutritional subsidies or thousands for
remedial care. We need to get the message across to the GOP
that this is a program that should be embraced rather than
eliminated or cut back.
It is too soon to know what cuts await SSI, SSDI, Medicare,
the Supplemental Nutrition Assistance Program (SNAP, aka
food stamps), Fuel Assistance, and Section 8 and other HUD
housing programs that enable persons with disabilities to live
in the community. We know President Trump plans to decrease
taxes for the wealthy, and there are few other areas of the budget
where the GOP can make cuts to offset the loss of tax income.
Advocates anticipate attempts to make dramatic cuts in these
programs.
It is important that families partner with The Arc and other
disability groups to educate our legislators about the important
role Medicaid and other benefits play in our lives and those
of our children. If we do not take a strong stand to fend off
proposed cuts to services, it may be too late for an entire
generation of persons with disabilities. According to Nicole
Jorwic from The Arc, “It is very important for advocates to
speak up and tell their stories.” Now is the time for action. These
proposed changes are not a done deal. I hope this article inspires
you to become involved with The Arc’s Disability Advocacy
Network and to fight to hold on to those benefits for which we
have fought so hard. Go to The Arc’s website, thearc.org, to see
how you can become more involved in the fight to hold on to
our lifeline. FT
RESPONSIVE SOLUTIONS
Two simple words that explain our commitment to you. Being
responsive is a critical element in building a strong attorney client relationship. Whether you are a new or existing client,
we’ll be quick to respond to your needs with the knowledge
necessary to find solutions to your legal concerns.