This Is How We're Failing Parents Raising Children With Special Needs
“When do you sleep, Liz?” I’m asking for the article, but I'm also concerned, frankly, about her long-term sleep deprivation. “I typically get two hours in a row, sometimes four, at night. Then I cat nap during the day.” I pause to let that sink in. I ask how long it has been like this, how long it's been blatantly clear to her we're failing parents raising children with special needs. She tells me it has been like this for five years.
Liz Heflin is a single mom who is raising two children in California. Her eldest, Kaitlyn, is 15. Kaitlyn has complex medical needs that have lead to her dependence on Total Parenteral Nutrition (TPN), meaning nutrition via IV fluids. Kaitlyn qualifies through her state's Mediciad waiver for 16 hours a day of nursing care from a Registered Nurse (RN) to help support her living at home. However, there is no nurse to staff these hours. She's been on a waiting list to receive nursing care for the last two years. Kaitlyn is also too medically fragile to attend school, so her mother is the only person meeting Kaitlyn’s needs 24 hours a day. Her needs include complex interactions with IV lines, medication administration, and tube-feeding every two to three hours throughout the day, in addition to emergency medical assessment and seizure response — all of which require Heflin to be alert and attentive day in and out at a level that is not typically required of parents, or, even, medical personnel.
Unfortunately, Liz Heflin and her daughter are not the exception. Across this country, there are many families struggling to access and staff caregiver and nurse positions to help support their children who are medically complex and live at home. Often, the importance of these caregiver positions can be misunderstood, as Heflin tells Romper: “Home nursing care is not babysitting. It is just as important as hospital care and deserves the same training, oversight, and accessibility.”
In-home nursing care (also known as private-duty nursing) can be provided to children with severe disabilities through their Medicaid waiver programs. These programs allow such children to access supplemental Medicaid to pay for the healthcare costs that are not typically covered by private health insurance, such as long-term in-home nursing and medical equipment. However, the programs are run state by state. Not all states have comprehensive Medicaid waiver programs, and among those that do offer such programs, many states, like Florida, have lengthy wait lists to access them. Even fewer states are consistently meeting the demand for nurses — and the pay for for these services varies significantly, but is often significantly less than what a nurse might make in a hospital setting.
Other programs, also run on a state-by-state basis, allow individuals with disabilities to utilize non-nurse caregivers, such as certified Personal Care Aides or personal assistants (who have no required medical training and typically make minimum wage or only slightly more). The reasons it is difficult to staff all of these positions is complicated — resulting from a small workforce to draw from, lack of knowledge about these caregiving positions, and, of course, poor pay.
So, why is home care for medically fragile children something we all should be worrying about? The population of children needing caregivers is a growing population, one study in Pediatrics showed a 17 percent increase in developmental disabilities in school-aged children between 1997 and 2008. Additionally, the survival rate of children with complex medical conditions has increased in the last decades. At the same time, the population of available in-home caregivers is shrinking, primarily due to poor pay rates. All of this is leading to an impending crisis in care for these vulnerable individuals and their families.
When I spoke to Heflin about her daughter Kaitlyn for this article, she began our discussion by explaining some of the many wonderful things about her daughter, telling Romper that Kaitlyn “loves art, all things craft-like, adventures, learning about inspiring women in history, music, books, and her family and friends.” Heflin explains Kaitlyn is “consistently positive and spends so much of her day creating art and making notes for others,” and only then did she dive into the other things that are part of Kaitlyn’s days: seizures, complicated gastro-intestinal problems, extreme fatigue, multiple medications, and constant care.
Since Heflin has to provide all of Kaitlyn’s care without nursing support, she is fortunate that California has a program called In Home Support Service (IHSS), which pays caregivers to help support individuals with disabilities to remain in their homes. Unlike many other states, in recognition of the fact that parents of medically fragile children often are often the most qualified caregivers for their children, California allows parent caregivers of minors to be paid to care for their child. Heflin is paid to care for Kaitlyn for seven hours a day, but Heflin is clear that she’d rather have the nursing support Kaitlyn is entitled to and work outside of her home. This is not the way Heflin planned her career. She has an associate’s degree in administration of justice and would like to go to law school, but she cannot find care for Kaitlyn in order to do so. Heflin tells Romper:
I’m embarrassed I’m on a program to be paid to care for my daughter. I’m always a bit ashamed of myself. We judge each other for needing help. But if someone could show me a different way, that would be wonderful.
In April 2016, Heflin advocated for California Senate District 2’s Senator McGuire’s bill SB 1401 to create a pilot program aimed at increasing access to nursing for children like Kaitlyn. The pilot program would have raised the rates of pay for in-home nurses in the regions facing extreme nursing and caregiver shortages. For instance, according to McGuire’s website, “In Los Angeles County, there are approximately 600 children who qualify for in-home pediatric nursing care. It is estimated that 50 to 60 percent of those children are not receiving the care they qualify for. In many cases, parents quit their jobs or even move across the state to find adequate in-home nursing care.” Heflin’s testimony before the Senate Health Committee can be seen in the video above. (She begins speaking at 9:29.) Unfortunately, the bill did not pass Senate Appropriations. Heflin hopes to see the bill reintroduced in 2017.
Meanwhile, On The Other Side of the Country
In New Hampshire, Audrey Gerkin is also raising a 15-years-old daughter, Lexi, who qualifies for in-home nursing care. Lexi is believed to have a genetic disorder stemming from a mutation in her SMC1A gene, which causes her medical complications, includin seizures and an inability to swallow safely. Lexi is 100 percent tube fed through an abdominal feeding tube into her intestines. She is also non-verbal and needs assistance walking. Like Heflin, Gerkin prioritizes telling Romper the things she loves about her daughter, she says that she wants to be sure to “say all the positive things about Lexi… She is so patient, forgiving, loving, and kind. She teaches me way more about life than I teach her.”
Lexi attends school four-and-half days a week with a nurse who's at her side from when she gets on the bus in the morning until she arrives at home. The nurse helps to suction her airway, watch for seizures, and assist with transitions, school work, medications, and toileting. In addition to her time at school, Lexi qualifies for 60 hours a week of private-duty home nursing care. Gerkin, however, is currently only able to staff an average of 25 hours a week between three different nurses. She explains to Romper that trying to fully staff the hours designated to Lexi is a constant battle because of the poor pay for in-home nurses. She says,
We did have a nurse that we all loved and who became a part of the family, but she left for a hospital position because she needed health insurance and higher pay. One year, we had 13 nurses come and go.
Despite the challenges in finding and keeping in-home nurses, Gerkin underscores how important nursing is for their household: “it takes a tremendous amount of work to keep [Lexi] healthy and… private-duty nursing gives her that stability. For me, it allows me to work, as well as complete other typical family things, such as grocery shopping and keeping up with my other kids activities.” This support allows the rest of their family to not sacrifice their needs to keep Lexi safe, but, Gerkin says, “that is a minimum set bar we meet.”
In-home nursing is not without its drawbacks, Gerkin explains, especially much in the loss of privacy. Lexi occupies the master bedroom and bathroom due to her accessibility needs, while Gerkin and her husband use the bedroom next to it. She says, “I frequently take the walk down the hallway, past Lexi’s room and the nurse, in a towel from our bathroom to our bedroom.” Nurses have opened the door to her bedroom and bathroom without permission and have walked in on her younger daughter changing. She explains that it's hard to explain her life to other people who don’t live it: “I think people don’t understand the time consumption of caring for a child with special needs, as well as the limited choices available to us.”
Gerkin, like Heflin, has taken her concerns about the scarcity of quality in-home nursing support to her state government. Gerkin is the chair of the Nursing Shortage Commission, which she sits on with members of state government and representatives of the healthcare community. Gerkin tells Romper about the factors that seem to be contributing to nursing and caregiver scarcity. She explains,
There is a waiting list of people trying to get into nursing schools. There aren't enough faculty to teach or clinical placements for hands on learning. There are no incentives for going into in home health fields. The reimbursement rate and therefore pay is awful. [And] most nurses are over the age of 50 and getting ready to retire.
She says that steps are being taken to see the effects of increased pay on nursing in New Hampshire. Last February, the Department of Health and Human Services put together a pilot program, the Emergent Support Initiative, where nurses for six families received increased pay rates. And all private-duty rates in the state were raised for the first time in ten years as of April 1, 2016. According to the Concord Monitor the reimbursement rate for LPNs and RNs increased around 25%, for example the day shift RN rate rose from $41.58 to $52 and the rate for LPNs on night and weekend shifts rose from $38.29 to $56. However, this rate is not the nurses' take home pay, but the amount that their agencies are reimbursed. According to the Concord Monitor, prior to the increase "nurses were paid $21 to $25 per hour, far less than a full-time nurse working in New Hampshire hospitals." Hopefully these increases will dramatically change the number of nurses available for in-home care, but it will take some time to see the full results of such efforts in New Hampshire.
And In The Midwest
Susan Agrawal became a disability advocate in 2003, transitioning from her career in academia soon after her daughter Karuna was born with multiple medical complexities. Among her many advocacy pursuits, Agrawal founded an organization called the Medically Fragile and Technology Dependent (MFTD) Waiver Families to support and advocate for the families of children who are medically fragile, technology dependent, and qualify for home nursing care under the Illinois Medicaid waiver. In Illinois this population is primarily include children with tracheostomies, vents, and central lines. Agrawal explains to Romper,
There are about 1,000 children who have been approved by the state of Illinois to receive private-duty home nursing care to allow them to live in the community instead of in hospitals or institutions. Unfortunately, the state pays nurses so poorly — and has actually cut the reimbursement rate twice over the past four years — that hardly any nurses will take these jobs.
This has meant that these families are going without the nursing support their children need, and are legally entitled to. As a result, she says, “Children are literally living in hospitals, and our few transitional facilities are filled to capacity.”
The one thing that continually struck me was the extent to which the desire for change and improving care for children (and adult children) with disabilities is driven by parents.
Families from the MFTD Waiver Families group have filed a class-action lawsuit against the State of Illinois in OB v. Norwood. Agrawal explains that the lawsuit states “that Illinois has not lived up to its legal obligations to provide nursing care for these children. The judge in the case ordered that the state must do everything within its power to immediately provide care to these children, and this order was recently upheld in federal appeals court.” A second lawsuit is also underway in response to Illinois' 2014 and 2015 elimination and reduction of nursing care for hundreds of children. Agrawal says to Romper that these cuts resulted in "66 percent of children in one program losing nursing care, and 32 percent of children having their hours reduced. Our families similarly worked together with several local and national law firms to file a class-action lawsuit that halted these cuts and reductions, restoring home nursing care to the families in this program through a judge’s order.”
We know that pay rates for nurses doing home care are certainly contributing to the nursing shortages. One home care nurse I spoke to, Denise Carutasu, has been providing home-care nursing for over 12 of her 28 years as a nurse. She was drawn to the job for its flexibility when her children were young, but she stayed in the field because she loves her job. Carutasu tells Romper, "I love the personal connection that home care allows you to form with your patient and their families... you can really become... a valuable part of your patient's life because you become a part of their surrogate family."
However, she explains that the pay doesn't allow for growth: "I have been a home care nurse since 2004 and have never had an increase in my hourly wage. In fact, there was a period of time when... our hourly wages decreased." Carutasu also explains that she thinks home-care nursing has a reputation for being "cushy" compared to, for example, hospital nursing. But, she says, home-care nursing can often be more challenging because you're on your own:
I've worked in hospitals, nursing homes, doctor office's and for nursing agencies. All those institutions provided a safety net of a network of other professionals, [but] at 2 a.m., in a child's bedroom when they're turning blue, you had better be able to 'handle' the cushy job of home-care nursing, because no one else is going to handle it for you.
What Are The Alternative Care Models?
Skilled nursing care is, undoubtedly, extremely expensive. With the goal in mind of providing flexibility in care for individuals with disabilities on Medicaid and cost savings, some states have created programs, like the program Heflin makes use of in California, that allow for non-nurses to provide in-home care to individuals with disabilities. Unlike California, most states do not permit parents to be paid to care for their minor children, but any other adult, including other family members, can be hired to provide this care. These programs are helping fill some of the caregiving gaps, but they are not without their problems.
I spoke with Bryan O’Malley, the Executive Director of the Consumer Directed Personal Assistance Association of New York State (CDPAANYS) , a trade organization supporting one such program in New York State known as the Consumer Directed Personal Assistance Program. According to their website, CDPAANYS “supports consumer directed assistance providers and recipients in all counties of New York State, offering supportive services, including, but not limited to: advocacy, systems change, and the promotion of consumer control and self determination.” O’Malley explains that through the consumer-directed program, individuals on Medicaid who have long-term health needs or designated representatives are responsible for finding, hiring, training, and finding Personal Assistants who provide in-home care.
The burden of this advocacy work is carried by the very people who are let down by the system.
Right now, the largest growth in people accessing this program are children with developmental disabilities and the elderly.
Personal Assistants are able to provide care that ranges from light housework to skilled nursing tasks, like suctioning, administering medications, and wound care. In New York, they're compensated between minimum wage and $12 per hour with very limited benefits. Considering that some such tasks replace the work done by higher-paid trained Personal Care Aides, O’Malley tells Romper, the consumer directed program saves the state of New York about $100 million dollars before accounting for the savings in nursing pay. For example, O’Malley says, “A generally healthy quadriplegic who has a headache needs to have a nurse come in to give them Tylenol because a Personal Care Aide cannot administer or touch medication.” If this individual is using a Personal Care Aide through traditional services, then a nurse is required to come to administer Tylenol, whereas if they have a Personal Assistant, that Personal Assistant can administer the Tylenol. And they can do so at a lower wage and without the additional cost of a nurse.
All of us, regardless of what our challenges are, have the need to experience certain lifetime transitions. And one of those is to not have to live with our parents for the rest of our lives.”
However, despite the savings such programs provide, at least in New York, this program has come under threat due to poor pay for Personal Assistants. O’Malley explains that when the program started in 1998 an assistant could make a good living. However, the rate of pay for this program, according to O’Malley “has not dramatically, and, in some cases, has not changed at all since 2006. At that time, these wages were about 150 percent of minimum wage. It was a great wage… you could recruit people if you were a consumer.” However, as these wages have stayed stagnant over the last decade, making these jobs less desirable compared to other similarly paid jobs requiring less work. He continues:
We are asking people to take care of our sons, our daughters, our parents. Societally, we should value this. I have nothing against paying workers at [department stores or fast food restaurants earning] a living wage. Everybody who works 40 hours a week should be able to afford to put a roof over their head, but, societally, we should value those who take care of our loved ones a little bit more than those who [make a fast-food burger].
O’Malley says that there are people who want to do this work, because it is rewarding work, but they need to be properly compensated and respected for the work they do.
In speaking with Janet Schoof Waters, who has been caring for 13-year-old Evelyn Sucher for almost five years, the connection that can exist between an individual and her caregiver is immediately evident. Waters spends almost 30 hours a week with Evelyn, who has a number of developmental needs and medical complexities. Water’s job includes after-school transportation to her activities, but she also plays an integral role in Evelyn’s medical and therapeutic needs and is in charge of “connecting the dots in her treatment and her education.” Waters explains that her job also extends to supporting the family unit and recognizing the unusual stresses that Evelyn’s parents experience. She does this, she says, because it's so easy to become “completely absorbed by the crises and chaos of each day of living with a child with multiple challenges and special needs.” Waters says,
I know I have become a critical team member. I take this responsibility very seriously and I am fulfilled by it.
And It Isn’t Just Children Whose Needs Aren't Fulfilled
In the background of each conversation about finding people to provide in-home care for children who are medically fragile is another question: What happens when these children grow up? Mary Ann Allen is the Chief Executive Officer of Wildwood Programs, a program whose mission statement reads as: "Working collaboratively with individuals, families and the community, Wildwood Programs empowers and enables children and adults with neurologically based learning disabilities, autism and other developmental disorders to live independent, productive and fulfilling lives." Allen is the mother of three adult children. Her eldest, Matthew, is 30 years old and is on the autism spectrum. He has significant communication challenges and needs help to do daily living tasks and to avoid dangerous situations.
In an interview with me for Romper, Allen says Matthew is “not in a situation where he could safely live on his own. He has a great sense of humor and is very engaging, but, because he has very little use of the spoken language, he’s learned to communicate sometimes physically.” Until Matthew was 24, he lived at home, with some in-home therapy support. However, when his younger sister went off to college, Matthew began what Allen described as a “slow decline into a profound crisis.” He began acting our physically, making it impossible for him to continue to be cared for at home. When I asked Allen how she and her husband decided it was time to move Matthew out of the home, she said, simply, “We didn’t make that decision. [Matthew] did.” And, for the most part, it has been a really positive change for Matthew, “in terms of seeing his growth and development and the way that people engage him and make sure that he is pursuing activities that he wants to do." Allen says she "see[s] him being much healthier and happier and having developed a whole lot of skills than I would have ever been able to bring out of him as his mother and really, [his] sole caregiver at home.”
There are 220 Matthews walking the halls right now. And if we’re not growing the system to support those people, those children as they become adults, then we are going to have a huge crisis on our hands.”
After Matthew was moved into a residential facility and his crisis ended almost immediately, it became clear to Allen that her son had been telling her it was time for him to move out of his childhood home. She explains that in her role as Wildwood CEO, “The biggest need families are expressing — coming from families like mine who, unless something drastic changes, have children [who] are not capable of living on their own — is [that they have their] adult children at home with them and they’re aging and they can’t physically do what they have been able to do in the past to support those individuals.” This is a real need, Allen explains, not only for aging caregivers, but for individuals, like Matthew, who won’t thrive living at home for the rest of their lives. She says these individuals can “begin to be depressed, they begin to develop risk for substance abuse, they begin to regress in the skills they’ve developed because they’re not [getting] sufficient opportunities to use them. All of us, regardless of what our challenges are, have the need to experience certain lifetime transitions. And one of those is to not have to live with our parents for the rest of our lives.”
The problem is, Allen explains, there just are not a lot of options for the kinds of out-of-home living situations adults like Matthew can thrive in. She says that with Matthew, there were a lot of individuals with autism hitting adulthood and the state had not done a good job of growing capacity to help those individuals live in their communities as adults. This, she says, is an exponential problem, “and we run a day-school program here [at Wildwood] for 225 kids. When Matthew was coming through the school program, he was probably one of the 10 or 20 handful of students [who] were considered the most complex and the most challenging. And he was the exception rather than the rule. There are 220 Matthews walking the halls right now. And if we’re not growing the system to support those people, those children as they become adults, then we are going to have a huge crisis on our hands.”
Wildwood was able to set up a small program to house five adult men living in the community in a fully staffed duplex, but, as things stand, this is not a solution to the impending housing and care crisis as more individuals like Matthew become adults. Allen says, “Unfortunately, it is very expensive to support somebody living in their own apartment with staff support. Families, unless they are millionaires, cannot sustain that and the public benefits that are available to our kids because of their disabilities can’t sustain that.” Allen says people are trying to think of ways for the models of care to continue to evolve and change, an she trusts that, as a society, we'll continue to strive for better and lasting answers to give individuals like her son the care they deserve. But the question is: When?
The burden of this advocacy work is carried by the very people who are let down by the system. And this isn’t just an issue for these parents — it's an issue that costs our economy every single time parents are pulled out of the workforce due to insufficient care to step in and provide for their children.
In talking with people for this article, the one thing that continually struck me was the extent to which the desire for change and improving care for children (and adult children) with disabilities is driven by parents. It's led by a mom in California who sleeps only two or three consecutive hours at night and finds time to call her elected officials regularly to beg them to pay attention to this issue. It's led by the same mother who testifies before the Senate Health Committee with her daughter sleeping in her wheelchair behind her because she’s just suffered through another horrendous seizure. It's led by a mother in New Hampshire who gets less than half of her nursing time covered and still volunteers to be chair of the Nursing Shortage Commission. It's led by a mom in Illinois who took care of her late daughter at home for years with insufficient nursing care and still helps families whose children don't receive the services they need.
The burden of this advocacy work is carried by the very people who are let down by the system. But, the thing is, this isn’t just an issue for these parents — it's an issue that costs our economy every single time parents are pulled out of the workforce to step in and provide for their children due to insufficient access to care. It's a cost to our society when children who could live at home need to be cared for in facilities, or when avoidable medical complications arise due to inadequate care. It's a cost to our families who live for years without being able to take proper care of themselves. It is a cost for us all.