CMS Rule Gives Opportunities for People with Developmental Disabilities To live Free Lives

by, Renee Wood

Summary of CMS Rule

        The Centers for Medicaid and Medicare Services (CMS) came out with new requirements for Home and Community Based Services (HCBS) sections 1915 (c), 1915 (i), and 1915 (k) of the Social Security Act. Home & Community Based Services puts monies toward assisting people with disabilities & the elderly with services outside an institutional setting in order for them to live, work, recreate, etc. in the community at large. (Institutional settings are: sheltered workshops, segregated day habilitation programs, Intermediate Care Facilities [ICFs], Developmental Centers [DCs], Nursing Homes [NH] or any other residential or non-residential environments that segregate them from experiences and opportunities in the typical community). For this article I will refer to HCBS as “non-institutional settings”.

        The new Rule describes not only what services providers will be reimbursed for, but the environments and atmosphere in which non-institutional settings services can be delivered to be considered reimbursable. In other words, a setting may appear to be a community environment, a single unit apartment, but it functions like an institution, so under the new rule this provider would have to change the atmosphere in this environment to make it reimbursable. Conversely, could also be true. The place people reside, or work, might appear to be a non-reimbursable institutional environment, but if it functions as any typical person lives, and then, therefore, this could make it reimbursable for community based services. CMS calls it a new “Rule” but actually it’s a fine tuning of the social milieu in which Home and Community Based Services were intended to be provided in the first place; which was a life truly lived in the community that mirrored the lives of others without disabilities. What parents, providers and county board workers might misunderstand is that this is REALLY NOT A CHANGE in direction, but the creation of a mechanism to bring providers of non-institutional settings services back into compliance. Of course, the best way to ensure compliance is to tie it to funding.

        Although there have been numerous forums around the State of Ohio that attempt to explain this Rule, it’s still not clear to people what this Rule really does is hold providers accountable for assisting someone in engaging in life within the community, rather than keeping people institutionalized in small, but isolated settings within the larger community. I believe there are a couple reasons for this misunderstanding: 1) the public is not well versed on how Medicaid funding streams work, and 2) also understanding the unique purpose for why each of these funding streams were created. Although on the surface, it would appear that both these programs (Institutions and HCBS Waivers) seem to do the same thing – care for the needs of the elderly and disabled who are Medicaid eligible, but actually, institutions (Nursing homes, ICFs and other residential care facilities) have a different stream of funding than non-institutional settings services (Waivers), as well as a different purpose in caring for those who are elderly or disabled. I will try to give a brief explanation of institutions who’s purpose was to warehouse those unable to care for, or support themselves in the US, as well as the birth of Home and Community Based Services in which ALL Waivers are funded under.

History of Long-Term Care in the US Since 1950’s

        Let us start with a brief historical overview of care for people with disabilities since the 50’s. In the 50’s, 60’s and even into the early 70’s families were encouraged to institutionalized children with DD (having a disability before age 22 is considered a Developmental Disability) and just leave them there for life. Families who chose not to institutionalize their children were solely responsible for the care of that child for life. If the parents died before their child, and there were no other family members willing to care for that disabled person, they were institutionalized. These were big State institutions run by the State on shoestring budgets with State monies. In 1975 Willowbrook ( was finally closed after a 5 year battle exposing the horrific conditions in these State run institutions. The closure of Willowbrook forever changed the way people with DD would be cared for in the US.

        In 1965, Title XIX (19) of the Social Security Act created Medicaid to help low-income people with disabilities with medical expenses. In the beginning of Medicaid, the only MANDATORY long-term care service (providing assistance with dressing, bathing, eating, etc. for an extended period of time, or for a life-span) was exclusively for Skilled Nursing Facilities (nursing homes, ICFs, etc.). These facilities are known as “institutions” because they are strictly regimented leaving residents with little control over their day, or even dreams for a life lived. One definition of the word “institution’ according to is; “a public or private place for the care or confinement of inmates, especially mental patients or other persons with physical or mental disabilities”. I emphasize that institutions were the ONLY option for people needing assistance with daily care and who received Medicaid.

        In the 1970’s non-institutional settings became an OPTION through Medicaid, but it was only used in a few States such as Oregon. In 1981, due to the out-cry of elderly and disabled persons wanting care in their homes rather than nursing homes, ICFs or other institutional settings, Waivers (known as HCBS Waivers) were born! These were called “Waivers” because they waived certain Medicaid requirements to receive long-term care through that program. One requirement it waived was institutional placement. In other words, persons who were Medicaid eligible and needed assistance with; bathing dressing, cuing, medication assistance, etc, had the right to receive this, but only had the “right” to receive such care in a Skilled Nursing Facility – an institution. By receiving a Waiver they were waiving a life reflective of an institution. The presumed thought by CMS behind making a Waiver was that people would resume a life in the community reflective of non-disabled lives. Unfortunately, there wasn’t any written regulation on what life in a community would look like, so basically many (not all) providers of non-institutional settings were having individuals live as if they were institutionalized. CMS rightfully said; “No, if that individual wants/needs an institution, we DO have institutions, and we WILL provide that type of life – in an institution but not under a Waiver”!

        This history brings us to today’s reality with the new CMS Rule which in essence proclaims that; just because a person is disabled or elderly and needs some type of long-term care, doesn’t mean in order to get this care, they have to sacrifice their personal liberties such as; what and when to eat, where to work, who to hang-out with, willingly engage in sexual relations, participate in recreation and leisure activities that they choose as an individual, etc. I find it hard to understand why some parents of people with DD struggle with this new Rule. CMS is not talking about “less care”, they’re talking greater opportunity to actualize one’s life, to find ones’ own purpose and reason for existing, with assistance! This should be a dream come true for parents! How torturous would it be for any individual just to exist in life with 50 to 80 years with the same routine, safe and sound (supposedly – we’ll discuss later the illusion of institutions being a “safe” place) packed in pillows from the greater world?

What Is It About These Established Institution-like Settings That Parents Like?

        I imagine the regiment of institutions brings parents some kind of comfort by looking at an itinerary of what goes on daily in that; provider agency/group home/ICF/workshop/day hab, and to imagine they know what’s going on in their child’s life at any given moment. Also, I think that parents build a repport with the staff and authorities in these organizations, believing this relationship will ensure these caregivers will take care of their adult child – and physically speaking (bathing, feeding, dressing) they will take good care of them – the public will never see conditions anymore like the Willowbrook images. Some parents (who are often the most vocal) are satisfied with this bodily care, believing there’s not much beyond these mundane things for their “severely disabled” child as they refer to them. I will not attempt to disabuse these parents of such low expectation of life for their child, but what I will say is these notions are forced on the vast majority of us with DD who want more from life than just to exist with good hygiene, good medical care and aesthetically pleasing surroundings!

        As I listen to these parents around Ohio express their heartfelt concerns and fears this CMS Rule may have on their adult child, I hear the language used by my parents and grandparents when discussing my life, before I escaped them. Their fears are real, but they are content with what they have, and fear “the change” is worse than what they should fear now! The statistics show that people with DD are physically and sexually abused in astronomical proportions in settings that are isolated, and are operated by the same provider (or those who work collaboratively with a provider), in running the residence they live in, the day program, transportation, case work (ISPs, Behavior supports, etc.) and recreation! When people with DD truly live, work and play in the greater community, they are among the general public, therefore subject to greater scrutiny by the whole community, with an ample opportunity to tell about the abuse to a person who has no financial stake at risk. I only site this epidemic of abuse here to emphasize that being “sheltered” is not only cheating one of a life actualized, but it’s not safe either! Will being in the greater community solve the abuse of people with DD? No, being in the greater community will not totally stop abuse, but it will help expose it, and maybe the fear of being exposed will curtail it.

        We must understand also that parents of a child with a disability have an incredible amount of love and devotion to that child. Most would give their life if it would change their child’s situation. It pains parents immensely to witness their child struggling (from their perception) through life, therefore they believe their child should have everything the system has to offer to make life as easy and carefree as possible for them. It’s kind of hard to argue against this idea because I do also believe everyone should have what they need for the opportunity to live a successful, self-actualized life. I also know that each person is an individual with different needs, abilities and desires, even if they share the same type of disability, or level of impairment. I’ve often argued too much support services is as detrimental, as too little supports because they get in the way of living life and challenging oneself to become totally what they were meant to be.

        You’ve heard that saying, “Too many cooks in the kitchen will spoil the broth”? Well it’s the same idea with supports for people with disabilities, especially people with DD. They never said how many cooks is the correct number to have in a kitchen, because that depends on many things like; how much broth one is making, the timeframe it must be finished, the type of broth, etc. This saying just means too much help is as bad as not enough help! This concept implies getting the right balance in order to get the best result. I believe this is a tough concept for parents to grasp because they’ve come to believe the more help they receive for their child the better. In some cases such as the child has all of the following; vent dependent, blind, tube fed, non-communicative and an IQ under 40, that child does need and deserves much support just to comfortably get through the day with whatever activity helps him to engage!

        Another tough concept for some parents of children with DD may be that, as much as they know and love their child, they never will understand the experience of living with DD. Most parents raising a child with DD, do not have DD themselves. It would be similar to raising a gay child, or a child of another race. Although a parent may be accepting of that child’s uniqueness, from an experiential viewpoint, they can’t understand their culture; the art, music, language. Especially with DD, parents tend to medicalize it (because it is a reality that their child may have needed medical intervention and they were responsible for making sure their child received that) so that’s what they understand about DD mostly, that and what all the “professionals” (who are also not persons living with DD) declare their child will never do. On top of that, parents who don’t have a disability, come pre-packaged with the societal concepts of disability. So parents just have hope in the supports rather than in their child with DD. The idea of; the supports will make my child’s life, rather than, my child will utilize and manage the supports he needs to make a life for himself. I want to emphasize again this is not blaming the parents for low expectations of their child with DD. For this low expectations of people living with DD is a societal concept which was imposed upon these parents since they were young. The CMS Rule is attempting to correct these misconceptions of people living with disabilities for society to see people with any type of disability, when given appropriate supports, can manage their own life and become productive citizens.

        Another thing parents cling to is this notion that; living in an ICF, or working in a sheltered workshop, is somehow the “choice” of their child because he likes it where he’s at. In discussing this with workshop providers who say people with DD cry when faced with the fact that their workshop may close (workshops are not illegal – they just can’t be funded with waiver dollars), I often cite the fact that when black people were freed from slavery, many of them in the south chose to stay on the plantation where they had been enslaved. Why? Fear! This is always the way it’s been, so they know nothing of another life. When blacks (people with DD) traversed outside plantation/workshops, people did not give them a fair shake, and were not very nice to them, maybe even hostile, but then, is this a real choice to live an unfree life, or is it just the choice that’s easier for everyone?!

        In other words, how many typical kids (or even kids with DD) express dreams as a child of becoming a sheltered workshop worker (with less than minimum wage)? None! How many black people long for those days of working like slaves on plantations? None! But when placed there as a young adult, with no other experience (except the occasional young person who tried the community and had a bad experience), one assimilates to their environment when they feel they have no choice, or been told they have no other choice. Just like people in jail, they will either become very compliant; learning the ropes, sucking up to those in charge to get nice treatment and an occasional favor, or they will fight, have extreme behaviors, but they will also make friends there and won’t want to leave after building a life with what they were given. But it was NEVER a free choice from the start – it was the ONLY choice, and it became a life assimilated to, that now has become their known reality. And truthfully why should they (older people with DD who have assimilated to the workshop/ICF) have to change now? They shouldn’t be forced out of workshops, just as they should never been forced in. At the same time, Waiver dollars should never pay for another person to go in a workshop/day hab/ICF!

        This is the problem parents should focus on: If they want workshops to continue, find ways to fund workshops and segregated day habs without Waiver dollars! Remember, Waivers are for community based settings as determined by Federal Medicaid Rule. Or turn workshops into real community integrated settings where DD and non-DD persons work side by side doing the same task, for the same pay! One might research how workshops were funded before Waivers, finding, as I did, that parents and private organizations funded sheltered workshops long before Waivers were even thought of. Some workshops applied and received grants, others were taken on by private enterprises.


        The Federal Government with the new Waiver Rule, is not cutting services, it’s merely bringing back into compliance the original intent for Waivers. The intent of Waivers were; that all qualified people who need long-term care assistance from Medicaid, and who are able to reside in the community, shall receive a Waiver, and have the same type of life; opportunities, freedoms, choices, and risks, as those who do not receive Medicaid. Those who need care outside of a community setting, shall receive that assistance in an institution. It’s actually quite simple, but a big step towards true equality for persons with disabilities!


4 thoughts on “CMS Rule Gives Opportunities for People with Developmental Disabilities To live Free Lives

  1. Hi Renee, enjoyed your overview of this CMS/waiver craziness. I apologize now for my coming verboseness – a result of my unemployment, I think. You used a phrase in the 1st paragraph of the History, about parents opting for institutional placement who then “just leave them there for life”. I don’t think I’m ‘touchy’, but that phrase seemed a bit judgmental. You never met my daughter Sarah, who had Rett Syndrome, was non-ambulatory & nonverbal, & had a laundry list of medical issues that kept me pretty focused on her moment-to-moment needs. When she was 18, I damaged one knee lifting her. I pieced together care arrangements for her for 3 months before realizing I wasn’t soon going to recover. Sunshine offered placement for her & I grabbed it. For readers outside of Toledo, Ohio, Sunshine’s an ICF. Sarah’d gone there for respite for years; to have her live there was almost a dream come true. I say almost because my dream was actually a home in the community with other people her age. I had 2 reasons for keeping her at Sunshine rather than fight for a waiver. First, she required frequent daily nursing since she was by then medically fragile. She’d seem fine in the morning, & the next shift the nurse might find she had advanced pneumonia. It was only due to the presence of on-site, alert nurses that her precarious health was safeguarded. I don’t know of any home type settings with FT nursing, nor a DD waiver that provides FT nursing, nor budgets large enough to pay for it. Second, I assert that by being in that facility, with the constant flow of people in & out of that room, she was safer from possibility of sexual abuse, AND she had more typical-people-interactions throughout her day than she would have in that dream home of mine. I visited her frequently, & saw lots of other families doing the same. Yes, some place their child & never return; at least as many stay quite involved, visiting at Sunshine or taking their child out for fun events. I recall John Martin chiding me for judging one mom, telling me I didn’t know the “why” of her lack of visitation of her son, & that maybe I needed to be more supportive. Some residents have no family left, so it may seem as if they’re abandoned. But my experience is that few parents just “leave them there for life”. Parents may have illness or injury of their own that limits participation. The employees I’ve known develop deep feelings for their residents, and work to make their lives as interesting & varied as possible, & provide human touch & affection. If other ICFs don’t have that kind of family involvement, maybe they need to examine what they do that discourages families. As for Sarah having choice, I looked for opportunities that allowed her meaningful choice. It’s difficult when the person in question has no clear way of expressing choice, even harder when it doesn’t matter to them. Add to that her frequent state of not being “awake & alert”, a prerequisite for communicating with her. I had to teach her staff how she communicated, & to recognize this “awake & alert” state, otherwise it was pointless & frustrating for them. This state can best be described as altered brain activity, which kept her locked away from us much of the day. I love the time she chose her new wheelchair color. She was clearly awake & alert. I told her that she had to pick a color for her new chair, & held the color chart in front of her face. I saw her track down one column, up the middle column, & down the last column. Then she laughed. Staff looked at me for a translation. I shrugged, & told Sarah I did not understand what she meant, & tried it again. She did the exact same thing, scanned down, up, down the 3 columns, then REALLY laughed. I got it, but waited on the three staff to guess. They didn’t quite get it. She wanted all the colors, and while that wasn’t exactly an option, she & I worked out a black frame which I then painted with glittery nail polish. I usually made her choose the direction we went when going for walks (rolling in wheelchair). She had to raise her left foot to make me turn left, etc. We ended up at a lot of walls. Once while in hospital I saw her staring at a nurse’s hair in puzzlement, made everyone stop what we were doing (some medical procedure), & asked if she wanted her hair like the nurse’s – thick, obvious highlights. She blinked YES!, & once she was well again, my stylist enjoyed doing just that. Sarah & my stylist became fast friends & excluded me from future decisions on her hair. Again, Sarah’s choice. The only time I know I violated that choice principle was when I decided she would have a tracheotomy rather than die. She was pissed at me for months for allowing the surgery. I’m not sorry – it gave me another 18 months with her.
    A suggestion – I’d love to see a constant quiet parent “re”-education campaign, with plenty of real-life examples of community inclusion successes & failures, to give us fuel for thought about how our child could be another of those successes. I suspect lots of us older parents gave up dreams of ideal situations long ago, & we keep a death grip on what little service and funding we have, so expecting us to start dreaming now isn’t going to produce useful results without fresh inspiration. Using your own analogy, Renee, without some idea of what’s realistically possible out there in the big, bad community, our kids won’t leave the plantation. Another generation will go by, doing it the way we’ve always done, despite the freedom we now have to do it differently.

  2. Hi Joni,

    Thanks for your comments on my blog. I was hoping to hear from a parent! I must clarify a couple things because I chose my words very carefully, and I would be saddened if a parent thought I was saying, or even implying that they would just dropped their child off at a institution and willingly not see them again for life. In the context of the article I was speaking of the history of care for people with DD and how parents were encouraged by doctors/professionals to drop their child off and leave them for life. The article stated; “families were encouraged to institutionalized children with DD (having a disability before age 22 is considered a Developmental Disability) and just leave them there for life. In the 1950’s my parents were encouraged to place me in an institution. I was not questioning a parent’s choice, but rather the historic system that callously encouraged institutionalization from birth.

    Sunshine is probably one of the best ICFs in the State. I did my college practicum there and really enjoyed working with the residence. I took to heart the orientation piece where they explained “This is their home, so leave your problems outside for you’ll go home in 8 hrs, but they won’t”. I also saw a few residence who were high functioning like myself, I’ve, through the years, have questioned workers in ICFs why these higher functioning ones are there. The answer, and I will quote; “Renee, if we didn’t have people like you here we’d go crazy”! I’ve coin the term “padding”, the authorities do this in sheltered workshops too (more often than ICFs actually), naive parents place their child there, truly believing that’s all there is, or just unable to conceptualize anything else. Instead of explaining to these parents other options, and I mean explaining with knowledge and conviction, rather than just going through the list, the institution ends up keeping them because parents were not enlighten to see any other possibility. Some in authority know full well that individual doesn’t belong in that environment, but it makes it easier on the workers, keeps them happy – so these individual are used as “padding” to keep things comfortable. Someday soon I’ll write on the “commoditization of humans” and this might make more sense.

    To keep with my analogy about plantation, Joni, once the plantation (sheltered workshop) owners are require to pay minimum wage to workers with disabilities (this minimum wage is a hypothetical), and not have “non-disable” workers ALWAYS in charge of workers with disabilities, but rather have a truly equal environment, it would be easier for people with DD, and their parents, to see them in the larger community. You know well, I hang out with my long time friends with disabilities, but I live in the greater community and have non-disabled friends as well, so I believe we, as people with DD, need to own our identity, but also free ourselves from what has held us captive for centuries. I can’t paint a picture to relieve parents of their concerns because everyone’s picture of life is different, and part of the journey is painting your individual picture. What I can say is, CMS is not cutting services for HCBS (remember, ICFs are not in this Rule, that’s not implying they’re being cut, I’m just reiterating if your child’s in an ICF, this Rule does not affect them) so one who is on a waiver, will receive the same hours and level of care as now, the individual is just simply more free to talk to a neighbor over the fence, without his staff dictating, “Joni, it’s 5 O’clock, it’s time to eat”. So, you eat at 5:30 that night, and engaged with the neighbor! One might say, “Big deal, they should be able to do that now”! In theory it’s supposed to be that way, but that’s not how it works in reality. That’s what the CMS Rule is really serving to correct.

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