Time to step up for our siblings

Kristen Lasker for SibVoices

As a sibling of an amazing young man who has significant intellectual and developmental disabilities (I/DD), I can’t help but be concerned by potential changes that will come with repealing and replacing the Affordable Care Act. While I personally know many with I/DD who have benefited greatly from the ACA, I also know another group whose lives were thrown into financial chaos when it was enacted. My hope is that a new healthcare program will encompass the parts of the ACA that improved lives and will reform those that had a detrimental effect.

When it comes to the care and support of those with I/DD, there are multiple funding streams that can either improve lives or drastically reduce the quality of care, depending on changes that may or may not be made. One of the most vital is Medicaid, and that is the one that causes me to lose sleep at night.. (Though it helps me keep our local coffee shop in business!).

Medicaid is our country’s main health insurance program for people with disabilities and low-income populations. It is jointly funded by both the state and federal government and it is utilized by children, the elderly, blind, low income populations, and/or those with disabilities. In return for states providing certain programs and services for these groups, the federal government will match state spending at a certain rate — anywhere from 50% — 74% — and this reimbursement from the federal government is guaranteed. Currently, states have significant flexibility to increase spending (which increases the federal match), add beneficiaries, and determine how they administer the Medicaid program.

Disability rights advocates are justly concerned about the potential for Medicaid to be changed from the current arrangement to one that has a set funding structure and dollar amount. This is called a Medicaid Block Grant. In this scenario, the current flexible arrangement between the federal and state governments would end and the state would be responsible for any and all support beyond the capped amount supplied by the federal government. Unfortunately, there are already waiting lists (some in the tens of thousands) and a scarcity of services for those with I/DD. A Medicaid Block Grant would undoubtedly reduce funding for a system already lacking sufficient resources.

According to The Arc, a block grant “may force states to reduce eligibility, limit services and supports, cut reimbursement to providers, or any number of methods to save money.” Also, “In addition to forcing bad choices, block grants are likely to cause substantial conflict as groups with diverse needs compete for scarce dollars. The need for health care and long term services and supports will not disappear if federal spending is reduced.” The risk of a cut in benefits is almost guaranteed.

Perhaps most importantly, the proposal of a block grant for Medicaid would not address the true problems within the system such as rising drug costs, increased health care costs, and crisis health needs. Although it started out as a safety net for a small part of the population, many add-ons have significantly increased the number of people who qualify for benefits. In addition, those with developmental disabilities utilize Medicaid funding much differently than the other populations it was created to support.

So if Medicaid funding is changed to a block grant, what does that mean for our siblings — or anyone with I/DD? While it is difficult to predict how states will respond, it is a safe bet to assume that federal funding to each state will be reduced. This translates to the potential of (from The Arc’s Medicaid Fact Sheet):

  • Reduced funding or the loss of critical funding for services such as prescription drug coverage, direct care assistants, assistive technology, medical equipment (such as wheelchairs or prosthetic devices), and rehabilitative therapies.
  • Loss of home and community- based services and supports. Waiting lists are already unacceptably long and this would continue and worsen the crisis.
  • Families and loved ones would have to make up for cuts made by the federal and, in turn, the state governments. These costs for health care and long term services are not going to end and are statistically likely to increase. This fiscal responsibility would shift to the individuals, families, and providers.
  • The quality of health care for this population will decline. Without the funding that is so vital to an individual’s quality of life and health, many may be forced to forgo lifesaving treatments.
  • An individual could lose Medicaid altogether. If the state was forced to change the eligibility requirements, some individuals may be cut out of this vital support system.
  • Perhaps the most frightening: states could regress to prior unacceptable options that were used in the past. Instead of living in the community where they belong, individuals with I/DD could be relegated to living in situations reminiscent of institutions — if not institutions themselves.

There are more potential repercussions. Despite this author’s exhaustive search, the positive side or silver lining of Medicaid Block Grants remains elusive. Or is it just difficult to identify?

Relying on the Status Quo (We’ve always done it this way . . . )

Aside from being vocal and tenacious advocates for our siblings, contacting our legislators, educating the public on the issues surrounding those with I/DD and campaigning against block grants, what can we do to not only prevent a regression in service funding and quality, but improve and expand the vital services our brothers and sisters are entitled to receive? Do they have to remain in the Medicaid box that is always failing them?

Considering all of the problems with Medicaid and other I/DD funding sources (the inconsistent way funds are administered, the continuous threat of budget cuts and the fact that those with I/DD are disproportionately underfunded), perhaps time is ripe to ask if Medicaid (and other funding for those with I/DD) is fulfilling the original intent and mission — are our community’s most vulnerable citizens truly supported and given every opportunity to be as independent and successful as possible?

I tend to believe that most advocates, self-advocates, service providers and others within the I/DD world would answer “definitely not” to that question. Further, I believe those with a limited understanding of what it takes to care for someone with significant developmental disabilities would agree that the current system isn’t working. The status quo is no longer effective, efficient or productive.

There Is a Silver Lining…but you have to choose to see it

It is true that this is a time of uncertainty regardless of who you voted for in the election. However, I suggest that events prior to today may have created the perfect storm for a radical change in the way we support those with I/DD and the way we empower them with resources to support themselves. Why do those who are at the most risk have the least amount of resources, are the most prone to injustice and abuse, and often are the most defenseless? Why does this population have to continually justify (along with their families and advocates) their needs? Why do they perpetually have to fight for funding that should unequivocally be dedicated to ensuring their safety and survival?

Why does their ability to succeed or languish rest on the stroke of one pen or reliance on one ideal?

Years ago, a small group of parents believed in the then radical idea that children with disabilities could learn and be productive citizens. It is our turn to start a new discussion and employ revolutionary, nonconventional thinking when it comes to ensuring our siblings are not only considered, but also valued members of society. Our current funding system is leaving too many individuals, families, and communities with nowhere to turn.

As Advocates, We Have Options

Of course they are not optimal, but our first two options are to 1) fight to have Medicaid remain the same or, if that doesn’t work and block grants are approved, 2) fight to ensure state governments don’t take funding and benefits away from our siblings.

Option three holds the most hope for my brother and me. But then, I have always been partial to shaking things up a bit and challenging the status quo. If our siblings and their needs are significantly different than the other groups that receive Medicaid, maybe the system of support currently in place has evolved to better serve those groups and not those with I/DD. Could the time be right for a movement to establish secure, guaranteed, efficient and effective funding specifically designed to support our siblings and all who have a diagnosis of I/DD?

Maybe there has never been a more perfect time.

Kristen Lasker is the adoring sister of PJ, a young man who has autism and other disabilities. She understands the many, many challenges and blessings that come with having a family member with I/DD. It has become her life’s work to raise awareness and funds to help make the challenges a bit easier to manage….for the individual, siblings, mothers, fathers and for the world in which they reside. She is currently the Chief Development & Communication Officer at The Arc Central Chesapeake Region.

(The above opinions are those of the author only)