Fix The List

by, Renee Wood 

What Is Fix The List? and What Will It Do For Me?

Many in Ohio have seen this black and white or red and white logo for “Fix The List”, especially on social media, and may have wondered, “What is this all about”?!  Well, as a person who has been intimately involved with this process since the end of 2016, I’m here to explain what Fix The List is, and what it’s not.

In a nutshell, “Fix The List” is a phrase that summarizes the call to action necessary to start to update the Developmental Disabilities Waiver services system.  One part of DD Waiver system is something called a “wait list”, and that is where people with DD wait for their turn to receive services through a Waiver.  The Wait List Workgroup was pulled together by the Ohio Department of Developmental Disabilities (DODD) and is comprised of individuals receiving services, family members, disability advocacy organizations, Ohio Department of Medicaid, County Boards Association and employees of county boards as well as DODD employees.  The task of this workgroup was to work on those issues associated with the waiting list, such as the Rule that governs the waiting list – hence the term “Fix The List”.

What are Waivers

But wait – what the heck is a “Waiver”, and why does one have to wait for those golden – whatever they are!?  In Ohio, we decided that, we as a State, would care for the elderly and those with disabilities who needed daily care, but who didn’t have the economic means to provide this care for themselves – and we determined these people had a “right” to receive this type of care.  However, this “right” to long-term care services only applies to “institutionalized care”.  This means institutions cannot be an “optional service” through Medicaid services.  When the notion of home care was born, they had to create a “Waiver”, which waived the individual’s “right” to be cared for in an institution and allow Medicaid money to be used for long-term care services in the home and/or community.

Ha, the very fact that the Medicaid system still makes a distinction in funding in where long-term care services take place, is the crux of “why” the system is antiquated.  It is not only the DD system – but the Medicaid long-term service system as a whole, that makes funding readily available for institutional care, but not for services at home, at least not in Ohio.  This probably stems from how society as a whole perceives those who need care.  In general society believes individuals who require long-term care services need to be “placed” somewhere in order to get “specialized care”.  Home and Community Based Service (HCBS – i.e Waivers) provides long-term care services in one’s home and/or community, rather than receiving those same services in an institution.  Although in the vast majority of cases, community care is more cost effective then institutional care, it is not a guaranteed right and so therefore is an “optional service” in Medicaid, and theoretically can be cut.  So a Waiver is like a “golden ticket” to continue life in the community in the same manner as non-disabled – it equates to a ticket to freedom and, therefore, is why they are so valuable and sought after.

This means to start with, Ohio is working with a flawed system that guarantees funding for institutional care, but not long-term care for HCBS (i.e. Waiver).  The down and dirty – if one qualifies for long-term care services today in the DD system – they can get them virtually immediately through an institution, vs a 9 year wait for a Waiver for community care.  So this workgroup wants individuals with DD, family members, advocates and providers to know that their concerns are being heard to fix the antiquated service delivery system of the 20 century and bring it into the 21st century.

The actual waiting list is just one part of the service system.  To fix the waiting list for people who need services, the workgroup listened to the concerns of those who utilize services, and who sit on the wait list an average of 9 or more years to get their needs met through Waiver programs.  Until the Department of Medicaid program sees Community long-term care as an equal right to institutional care, it will never have the funding that institutions have, therefore the long-term care programs through Medicaid will never offer equivalent “readily available care” when choosing to receive one’s care in the community.  Fixing the list will not/cannot change the State and Federal funding issues of programs mired in institutional bias!  That being said, I feel the workgroup worked to do the best it could to ensure fairness, transparency and consistency for those with DD waiting for services in the current reality.

Should There Be A Wait List For Community Based Services?

In my not so humble opinion, no!  If there’s no wait list for institutional care, there should not be a Waiting List for HCBS (Waivers).  However, because of the flawed funding system which favors institutional care, we have what we have and until something changes, we are forced to work within that reality.

In order to fix the waiting list, the workgroup had to rewrite the Rule for the Waiting List that would ensure transparency, fairness, as well as consistency throughout the 88 counties.  What will this Rule fix with the waiting list, and what won’t it fix?  Let’s start with the question I know is the most prevalent, “Will it get someone a Waiver quicker”?  No!  The wait list fix only deals with how, and who gets on the list, it doesn’t create more waivers (that’s for another workgroup and definitely should be addressed).  This Rule does however set-up a central list that will be kept through the DODD to ensure individuals aren’t registered in multiple counties which inflates the wait list numbers.  It will have an assessment tool that all 88 counties will use to determine whether one has a current or immediate need (as defined by the Rule) to be on the waiver wait list.  If they have no unmet need currently, they will not be on the wait list, but can call their county board anytime their situation has changed to be reassessed for a need.  Needs can also be met through county board funds and/or other resources if they can safely and adequately meet a person’s needs.  Waiver is not the only access to community care.

Who Gets On The List vs Who Actually Gets A Waiver

What will not change from the old waiting list, is who will actually get a Waiver!  This is crucially important to understand.  Since Ohio lacks the funding to give everyone a Waiver to live-in, and access the community – a waiting List was created.  At the start Waivers were routinely given to anyone who met the criteria for DD services to start a life in the community with paid supports.  Well because of its popularity, lack of appropriate funding and monies still going to institutions at the same level, rather than shifting some to home care, the wait list grew until it was a fallacy.  In other words, there were/are so many people with DD who find themselves in genuine emergency situations that without a Waiver they are going directly to an institution that all of the Waivers (in the past) have gone to those in these types of situations.  The person who found themselves in a true emergency situation, may have been #48,999 on the wait list, but went directly to #1.  This means the person who was in the #1 spot, never received a waiver for years, until they themselves became an emergency!  So with a few tweaks to immediate need (emergencies), and current need (like foreseeing an emergency within a year), the waiting list is going to ONLY have these types of individuals on it, but even if one is on the list and Waiver services is the ONLY way to meet the individuals needs in the community, there’s still no assurance that they will actually get that Waiver in a year.

Truthfully, at least the new way of being entered on the wait list is honest about who’s actually going to get a waiver under the current circumstances.  The old waiting list had babies on there who had no needs right now, individuals who don’t currently qualify for Medicaid so therefore couldn’t get a Waiver anyway, individuals who are in ICFs and currently don’t want a change, but just in case they might – their name was kept on it.  Now they have a separate allotment of Waivers just for those with DD who want out of an institution, now there’s no wait to get out anymore.  I agree with this part of the Rule.

Where I struggle is with the definition of “current need”.  I’m not going to play dumb here, but in my opinion, most adults diagnosed with DD has some need for assistance or supports ranging from very little to very much, and there are various ways of meeting those needs – Waiver is just one option.  However, for those individuals who can only start their lives outside of their parent’s realm (family home/life/primary supports) by way of Waiver services, they will have to wait, even to get on the Waiver wait list, until their parents are very sick or dead.  This natural need to be autonomous of one’s parents or vice versa, will not be readily recognized by the Rule as a “current need”, unless one is a very strong and astute advocate, who will have to fight for their need for a life independent of their parents or vice versa.  The fact that a young person will have to fight their county boards to get their need for “independence” recognized as a “current need” is just repulsive to me on so many levels!

First, because of lack of adequate funding, a system which depends upon parental care (whether parents are willing or not, or the adult child with DD likes it or not), assumes indentured servanthood of parents for all of their healthy life.  Second, this Rule assumes people with DD who are forced to live with their parents until parents are either sick or dead, are living life in the community, and are suffering no ill effects from this arrangement.  I mean even if your parents happen to be “Ozzie and Harriet” it’s not somewhere an adult want’s to live til they’re 40, 50, or sometimes 60 years old!   Of course, I have no issue with the parents and adult child mutually agreeing on the parents continuing to support the primary needs of child as long as it’s presented as a choice, and not assumed that there’s no current need based solely on the health of the parents.

Also, assuming parental care is primary, doesn’t promote choice, it limits opportunity, and stunts adult development to the point that when one with DD is 40 or 50 years old and starts life outside their parent’s home, they are going to need many more services then if they would have been living outside their parent’s home in their 20’s or early 30’s.  I think if an adult individual with DD who; qualifies for DD services, is on Medicaid, wants to move out of parents home, and a Waiver is the only way to achieve that – in my book, that is a “current need”, and they should be entered on the waiting list.  They may be on it til their parents die, but at least it does reflect a “true current need” that is not being met!

Finally, we must remember it took a while to get the DD system into this condition, and it’s going to take effort to make a paradigm shift to get it out of it.  We don’t always get what we want on the first try, but we compromise and try again later.  There are no enemies at the table.  There’s no one who’s evil and truly wishes ill for people with DD.  But rather, just human beings with different backgrounds, philosophies and constraints working together, listening to one another, learning and trying to get outside ourselves into another’s shoes/wheels, in order to give people with DD the same opportunities in life as those without DD.  I give kudos to DODD for ensuring all voices were represented in this process and I hope they will continue in this in future endeavors.  Keeping open and good-faith communication is how we get there.

Note: The Rule is out to the public now February 14, 2018.  One can comment on these changes until February 28th!