Kim’s sons Elijah (l) and Isaac (r). [image description: Two young boys with light skin stand closely together with their arms around each other. One wears a blue plaid shirt, the other a yellow t-shirt with the words “Wakanda Forever” and an image of Marvel Comics’ Black Panther.]

My son’s night nurse just told me she’s leaving home health care. Through tears. She cried as she told me how much she loves us all and how hard she tried to make this work. She cried as she told me that the health insurance she is offered doesn’t cover her or her daughter’s monthly medications, and she just can’t go on without making ends meet. 

Isaac’s nurse began working with him two years ago, stepping in to become his regular day nurse, which helped him attend school – which he often missed. When his needs changed and we needed a night nurse, she quickly shifted gears to fill that spot. In Virginia, where I live, the median wage for home health care workers is $10 per hour. That’s right, $10 per hour. Nationwide, the median wage is $12 per hour. A living wage is at least $15 per hour. 

Isaac’s nurse cried as she promised to stay on as long as it takes to train someone new to do her job because she is so upset with herself for leaving us like this, even though it’s her family that’s been paying the price. 

My son Isaac is a hilarious, somewhat mischievous twelve year old. He loves all things Marvel and Mario Kart. He can’t wait to get home from school each day to get outside and play with his friends. Building forts in the woods is one of his favorite things to do.

Isaac had a tracheotomy to help him breathe until June of this year. He still has an open hole in his neck where the tracheotomy was. He also has a feeding tube that delivers nutrition directly to his intestines at night. He requires overnight care as his airway is still being assessed, and his tube feeding requires supervision. Without nighttime care he could dislodge his feeding tube, and it can only be replaced during a hospital stay. 

I am exhausted. Beyond exhausted, if that’s possible. I am so tired of working full-time to be the only financial support for my two boys, while juggling their needs, Isaac’s medical needs, and FIGHTING my government for BASIC needs. 

For my family, the home health care nurses funded by Medicaid’s Home and Community-Based Services (HCBS) are basic needs. When Isaac has a nurse, I can sleep at night. I know that somebody who is qualified is monitoring Isaac and keeping him safe.  Because of this I can be prepared to work the next day, and provide stability and much-needed health insurance for my children.  

The U.S. Capitol Dome illuminated at night—in the foreground are a bank of pale blue lights spelling out “Care Can’t Wait.

The Better Care Better Jobs Act (BCBJA), part of the President Biden’s Build Back Better agenda, is currently waiting for a vote in Congress. This bill would raise wages for the direct care workforce, create more jobs, and eliminate state waiting lists for HCBS programs. Over 800,000 Americans are on waiting lists nationwide, and this legislation would create 500,000 new health care jobs, which would, in turn, allow 1.1 million family caregivers to return to work. A September 2021 analysis by Moody’s Analytics shows that passing the BCBJA will have a positive impact on the economy, boosting our GDP and creating more jobs. 

Why can’t Congress act to pass this vital legislation? Why can’t Congress provide full HCBS funding of $250 billion we need to make sure that my son, my family, and millions of other Americans have the care we need?

My son needs nursing care so that I can work and support my family. My son’s nurse needs better pay so she can support her own family. But some members of Congress are fighting funding for the Better Care Better Jobs Act and the Build Back Better Act because, they say, the cost is too high. For who? I’m part of the economy, too. 

I need your help, because we will all need care at some point. Call your representatives NOW. Demand that they stand up and fight for our families. Tell them our care infrastructure is in crisis. Pass the Build Back Better Act, because Care Can’t Wait.

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Kim Crawley is a single mom to two amazing boys, Isaac (12) and Elijah (9). She has been a full-time special education teacher for 20 years, born and raised in Northern Virginia, and she loves raising my boys there. Kim became an accidental activist when her son Isaac lost his health insurance after hitting a lifetime maximum at the age of 15 months. Her family has been proud members of Little Lobbyists since shortly after its inception.

Elvina’s daughter Colby. [image description: A young woman with light-colored skin smiles at the camera; she is seated in a family kitchen. Her brown hair is pulled back from her face. She has braces on her teeth, and wears a gray hoodie.]

My daughter Colby has turquoise braces and a dimple in one cheek. Her blue eyes are turning green, just like mine did as a teenager. She wears her luxuriant brown hair pulled back to frame her differently shaped ears. The photographer Mary Ellen Mark called her ears, “her signature.” She loves the word “shoes.” She loves Lana Del Ray, Clairo, and Cat Power. Her body is rocked often and deeply by intractable epilepsy. 

During her first EEG as an infant she was regarded as a miracle. That she could not only survive the massive and frequent seizures, but could smile and breath and breast feed and pincer grasp at blueberries--she should not have been able to do any of this, given the severity of her seizures. Over the following 16 years, she has had brain surgery and multiple orthopedic surgeries.

Colby has apraxia and is nonspeaking. She has a series of sounds and gestures that people close to her can understand in context. She reaches toward the shelf with crackers when she is hungry. She holds your hand when she wants you to stay near. She pushes away the shirt she wants to wear when you give her a choice between two. 

Colby receives Medicaid Home and Community-Based Services (HCBS) through New York State, where we live. She qualifies for nearly 24/7 care. We have never been able to staff those hours. It’s the same story as everywhere else: low wages and complex work leads to a nearly non-existent labor pool. Add to that the high cost of living in a college town, such as Ithaca, and people cannot afford to live on current wages prescribed by state policies. 

 Colby is 16 years old now.  She has never slept through the night. She needs emergency meds administered. She needs care and attention before, during and after seizures. Colby needs full assistance to eat, attend to personal hygiene, and get around. Her independence will always require significant support from other people. 

Colby and Elvina. [image description: A black and white photo of a mother and daughter. The daughter, to the left, looks away from the camera, smiling. The mother looks directly at the camera.]

The first few years of Colby’s life I stayed home and my husband worked. His work required traveling for long periods of time. Then I took a turn returning to work, which was great for a while. Eventually though, the care of a medically complex child became impossible for me to balance with full-time work outside the home. We could find no other qualified caregivers to work for what New York State’s Medicaid HCBS paid, nor could we, as parents, be compensated for her care. In the hours I work that someone else could be employed to perform, I feel that I am not a parent. I am a caregiver, and caregiving is not the same as parenting. Colby is not work, but her care is work. 

It was a rapid descent from leaving full-time work to the food stamp application. Being unpaid caregivers meant our family qualified for $400 or so per month in SNAP benefits, and $600 or so per month in SSI based on Colby’s permanent disability. For a family of four. With a Grammy Music Award and a Smith College education between the parent heads of household, this was a shocking turn. 

But instead of deciding this was impossible, which it is, I dug my heels in.  We did what we had to do, like put dental care and car repairs on credit cards. Truly, what were our choices? Put our daughter in a permanent institutional placement? So I can work and afford life? Where are Colby’s person-centered choices in that equation?

My daughter deserves the dignity of excellent care that humankind, and a wealthy nation, are capable of providing. Our country needs to treat caregiving labor as infrastructure. And caregiving labor needs to be paid no matter who is doing the work. Colby’s care should not equal poverty for us, or for a direct support worker trying to subsist on current substandard wages. Raising wages for all care work would be a net positive to our economy. It would raise the GDP, lower poverty, and raise savings. The dignity of a liveable wage is within our capacity as a country and economy.  

A Message from Little Lobbyists:

Caregiving is infrastructure. Our kids, and all people with disabilities, have a RIGHT to access the services and support they need to survive and thrive in their own homes and communities. But in order to make that civil right a reality, we need funding to support better jobs for caregivers and improve the quality and quantity of care for our families. That's why Little Lobbyists support the Better Care Better Jobs Act! Please call your senators and tell them why YOUR family needs them to pass full funding for this historic bill in the reconciliation package!

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Elvina Scott is a mother, writer, and athlete. She has two children, one with disabilities, including intractable epilepsy. This parenting experience informs her writing and advocacy work. Elvina is an ultra distance runner. She is a graduate of Smith College. 

Cailyn out in her community, assisted by a direct support aide. [image description: A young disabled teen wearing pink sunglasses and a bright pink outfit sits on an adapted red bike. An aide assists her moving through a sensory “tunnel” (an open pipework on which various objects are suspended).]

The Better Jobs Better Care Act would provide desperately needed funding for Home and Community-Based Services (HCBS) for thousands of disabled children and adults nationwide. Through Medicaid waivers, HCBS provides skilled nursing services, direct support professionals, and equipment and supplies not covered by private insurers to people with disabilities so that they might live where they choose and remain in their homes and communities, rather than be sent to institutions. 

HCBS is an essential part of disability rights. However, some in Congress don’t understand these rights. Uninformed decisions by lawmakers threaten the lives of disabled people and those who care for them. Jen Reese, mom to Little Lobbyists Cailyn, shares her story. 

Tell us about your family.

My husband and I have two daughters, ages 9 and 13, and we live in Virginia. My husband is a software developer, and I work in a role supporting families like mine--with kids with disabilities. 

Explain your daughter Cailyn’s complex medical needs and disabilities.

My daughter Cailyn is 13 and a happy, smiley girl. At five days old we noticed her having seizures, and at a week old she spent her first week in the hospital. She was diagnosed at 4 years old with a rare genetic anomaly that affects proteins in her brain. Years of uncontrollable seizures have left her with intellectual and developmental disabilities. Due to these, she needs total care, including her liquids and medication via feeding tube. Cailyn does not communicate verbally and uses a wheelchair for mobility.  

When did Cailyn first get access to HCBS? How many years did you wait?

When Cailyn was about 16 months old, an early intervention therapist convinced us to apply for a Medicaid Waiver. She qualifies due to her disabilities and need for nursing home level of care. There was no waitlist for the entry-level Medicaid Waiver in Virginia, and it was life changing. We were able to have caregivers come into the house because a regular daycare could never take care of her. Plus she’d be super-susceptible to any germs from the other kids. We have good private health insurance that covers a lot, but sometimes medical equipment or services aren’t fully covered. Our out-of-pocket costs were tremendous before the waiver. Medicaid is Cailyn’s secondary health insurance and helps her stay in our home instead of an institution. 

If we didn’t have Medicaid, I would not have been able to keep working, we would not still own our home, and having another child would not have been possible, given the financial limitations. Cailyn waited almost 10 years for Virginia’s Developmental Disability Medicaid Waiver, a second Medicaid Waiver in Virginia that includes supports for employment and group homes. There are still approximately 12,000 people on that waitlist in Virginia, and they are given the waiver based on priority. Sadly, some adults have to be facing homelessness before they are awarded a Medicaid waiver. 

How do HCBS help your child and your family survive and thrive?

Without Home and Community-Based Services, our daughter would not be home with us. She would live in an institution. 

Our extended family has a history with institutions, and I saw it break my Grandmother’s heart. Her youngest son, my uncle John-John, had cerebral palsy and severe seizures. I remember him and have pictures of me as a little kid on the day we had to take him to an institution.

I can’t imagine my Grandmother’s guilt and fear. Guilt that she couldn’t care for her son anymore and fear of what would happen when strangers were responsible for his well being. Over the years, I remember stories of him getting severe burns because no one checked the temperature of the bath water before putting him in, and of someone dropping him and breaking his arm. But at that point, my Grandfather had passed away and my Grandmother had a bad back injury from having taken care of my uncle for as long as she could at home. 

The system has changed, and Home and Community Based Services will help my husband and I keep Cailyn home. We’re able to have nurses come into the house and help care for her, and we’re able to focus on activities with her little sister, keep up with household chores, or just take a break. 

Some members of Congress don’t think HCBS are real infrastructure. How do you respond to that? 

Infrastructure is defined as the basic physical and organizational structures and facilities needed for the operation of a society or enterprise. 

Seriously, you’re living in a bubble if you think Home and Community-Based Services aren’t infrastructure. Societies are required to take care of their disabled people, and we haven’t been doing a good enough job. If I didn’t have help for my child, I’d be out of the workforce. Caring for Cailyn also provides jobs for others. Infrastructure is not just bridges and roads. 

There are HUGE waitlists for HCBS, there aren’t enough providers for services, and the reimbursement rates are so low it’s despicable. A babysitter in my area for a child without disabilities costs about $20 an hour. Medicaid pay rates for caregivers for people with disabilities in my area has just hit $13.60 an hour--even Target starts its workers at a higher rate of pay than that. 

What would happen to your child and to your family if the HCBS you receive were reduced or even taken away?

Threats to Medicaid under the Trump Administration pushed my anxiety levels through the roof. If HCBS were taken away, my family would be broken. How would we come up with $6,000 extra dollars a month to pay for the feeding tube supplies and special formula Cailyn needs, plus diapers, plus medications, plus wheelchairs, plus a hospital-style bed, plus a modified van for transportation etc., plus, plus, plus …

How would we be able to keep her home? We’d be financially devastated. Bankruptcy would have to be a consideration, including selling our house, cars, and raiding our retirement fund--it’s a nightmare I’ve had many times. It is all overwhelming and makes me want to vomit at the thought of it. 

Do you know of families in Virginia who are still waiting for HCBS? What would you urge them to do?

I know many families who are still waiting--12,000 in Virginia alone. Waiting for our government to do the right thing and provide funds for disabled people to have a life like everyone else. Everyone should be able to live where and with whom they want. If they need supports, we have to make sure they are in place--healthcare, transportation, housing, and job supports. Please do the right thing. President Biden’s funding recommendations are a wonderful start and it’s really just the right thing to do!

Describe the power of HCBS in a single sentence. 

HCBS help keep my daughter happy, healthy, and safe. 

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Jen Reese is a member of Little Lobbyists from Virginia.

Dear Senator Warner,

There is a particular feeling, a whole set of sensations, ranging from shakes, sweats, feeling of rawness inside my body, aching bones, swollen lymph nodes under my chin and arms, nausea and weak/painful muscles that I get when my body is dumping thousands of white blood cells all at once from my lymph system into my bloodstream. It is awful and exhausting. This morning, even after a night's sleep, my legs and neck and arms ache badly and I feel a physical weakness that is hard to describe.

I say this here, in public, because today I have to care for my adult son who is disabled, and lifting him will be dangerous for us both, painful and exhausting for me. I will cook for my son, feed him, and assist with every single thing most people do without a thought. Today I will also support my daughter, who has a disability, too. I have done this in one way or another for nearly 30 years, and since the pandemic began, returned to supporting full time, every single day, one or both disabled family members. Since April, I have done this while also being treated for cancer, and I have continued to work throughout.

This was initially going to be an apology for not continuing later into the night last night, reaching out to people who might contact Senator Mark Warner about his intention to leave caregiving out of the infrastructure bill. But, no. I will not apologize.

Jill Jacobs with Senator Warner

Senator Warner, you may not remember me, but we worked together a whole lot when you were Governor of Virginia on Medicaid Home and Community Based Services (HCBS). Here is a photo of us together in your office one day when I came with my friend Keith to talk about HCBS. That day we talked about the value of caregiving, of caregivers, to disabled folks and their families, to communities, to society, to the economy. My family and I ask that you recognize again now that Caregiving is Infrastructure.

Since Covid began we have faced an ever-increasing caregiver crisis in this country. For my family, we are now finally 60% staffed. 60%. With my years and years of experience navigating the system, we are finally 60% staffed. Why? Because there are no caregivers anymore. Why should there be? We Americans disrespect caregivers. We called them 'heroes' during Covid, yet demonstrate by our actions, how we really feel. We view caregivers as worthless. We do not pay them fairly nor properly, offer zero health insurance benefits, no leave, no training, no career advancement. The pandemic's added risk of death finally broke the system. We need to fix this now.

The caregiving crisis is real and will only get more real as we face the daily care needs of an aging population and added numbers of Covid survivors.

I realize there is huge pressure now to make this Infrastructure bill pass and I appreciate and honor your work in a bipartisan way to get to that point. However, doing it on the backs of disabled people and their families, by not supporting caregivers, is taking a serious risk with human lives, the very people who have suffered and lost so much during Covid. And it harms the whole community, our country, our economy because this is a huge area of need right now, of potential employment, of people working and paying taxes, buying products, spending money, in every city and town in this country. Caregiving allows family members and many disabled folks to work, too, which diversifies our investment and increases our tax payments and spending. The caregiving spending in this bill is an economic investment in people, in cities and towns and states in a real, solid, human way.

Senator Mark Warner, find another way to reduce the amount of this Infrastructure bill. Keep caregiving in the bill and let's see HCBS flourish, create jobs, create community activities and living and spending.

Let's talk Senator.

Your constituent,

Jill Jacobs

P.S. For anyone reading this, I ask you to reach to Senator Warner, too, as well as anyone who represents you, and let this be known.

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Jill Jacobs has been working for disability justice for 28 years. She’s the Executive Director of the ENDependence Center of Northern Virginia (ECNV), one of the oldest Centers for Independent Living in the Country. Jill is a Social Worker with 22 years of experience in health and human service policy, programming, analysis and service delivery systems. She is a graduate of University of Texas and was trained by US Army Social Work Services at Fort Hood, Texas. Jill is also an activist, artist, mother of four, grandmother of three, and a resident of the Commonwealth of Virginia.

Sandra Stein (r) with her husband Matt (l) and their son Ravi (center) [image description: A white man and white woman pose on either side of a young Black man seated in a wheelchair. All three wear t-shirts with the words, “Caregiving Is Infrastructure.”]

“We shouldn’t live on this street anymore” I muttered to my son while pushing his wheelchair uphill toward an outdoor school gathering. I could feel my heart rate climb as we neared the top of the hill and sweat pooled inside my mask. My mind was occupied with many thoughts: the changes in state policy disallowing inter-state telehealth visits, the multiple medical facilities saying they would not provide care due to policy or insurance or prohibitive cost, his upcoming transition to middle school, and the choreography I was to teach his friends at the park where we were heading. 

Through his assistive communication device, my son had told me he wanted to do a dance performance for his upcoming graduation ceremony. This would involve all of his classmates dancing to the song Best Summer Ever, from the radically inclusive movie of the same name. We arrived at the park, my heart still pounding. I ignored it. I talked with his teachers. I took pictures of him reuniting with friends after fifteen months of strict quarantine. I fed him lunch. I taught his class the dance moves he had approved using hand signals. I didn’t say anything to anyone about my heart rate. I just kept going. 

Stopping what I was doing and asking for help did not even occur to me. As a family caregiver, I am my son’s transportation and food delivery system, his advocate and his interpreter. I am lauded for my perceived sacrifice and determination. I am hailed for heroism, tenacity and grit. Throughout the pandemic, my husband and I have been supplying these essential Home and Community-Based Services (HCBS) for our son on our own.

It was only when one of his friends asked if he could push my son in his wheelchair that I realized how bad I was feeling. 

“No honey, I’m using the wheelchair to balance myself.” 

I am accustomed to ignoring my own health needs as part of the heroic trope often projected onto--and internalized by--family caregivers. I push on. I power through. 

But all unattended infrastructure, like buildings and bridges, can collapse, and I suddenly felt like I might do just that. Returning to our apartment I told my husband my heart was racing and he connected me to our son’s pulse oximeter machine. One eighty. My heart had been racing at this speed for over an hour. But now I felt scared. My father and grandfather both died young of  heart attacks. My hands and feet and face went numb. I laid down so I wouldn’t fall. My husband called 911. EMS hooked me up to EKG, diagnosed my supraventricular tachycardia and gave me IV medication to stop and reset my heart before taking me to the ER.  I was discharged nine hours later with a referral for cardiology follow-up. 

I was shaken. How did I let this go on for so long? What would have happened to my son if I had blacked out on the hill? 

At my follow-up appointment the cardiologist explained this event saying, “Most people come to a stop sign, slow down and stop. Your heart instead drove in really fast circles around it.” I laughed at the aptness of this metaphor for my life and cried when he diagnosed me with caregiver fatigue. 

Yes. I am exhausted. I am bone-tired from battling insurance denials and inaccessible architecture and ableist attitudes (while continually unlearning my own), and constantly being told “No” when trying to meet my son's medical and educational needs. I am depleted after over a year without paid HCBS caregivers we could not safely have in our apartment until my son was vaccinated. I am worn down by the byzantine administrative hurdles and limited funds available to pay for caregiver services now that  we can reinstate them. I am tired of running in circles around stop signs.

The Biden Administration’s plan to invest in human infrastructure--in Medicaid and HCBS--a bill called The Better Care Better Jobs Act: A Historic Investment in the Care Economy, is, in fact, historic. Our country’s failure to invest in caregiving as infrastructure has caused significant loss and unnecessary suffering to disabled people and their families. 

I am no longer willing, or apparently able, to allow the heroism trope to govern my behavior. I refuse to deny my own limitations or allow them to impede my son’s health and wellbeing. I don’t want to hear well-meaning people say,, “I don’t know how you do it,” or “God doesn’t give you anything you can’t handle,” or “He is so lucky to have you.” I want us to collectively dismantle the unjust structures that limit access to disability services and support. 

Twenty percent of Americans have at least one disability. The pandemic has shown that any one of us could suddenly and unexpectedly become disabled or a long-term caregiver, or both. It’s time we organize ourselves for this reality. We must invest, now, in Home and Community-Based Services. 

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Sandra Joy Stein is a writer and educator. 

Ron Carlson [image description: A white-appearing man speaks at a lectern with a microphone]

Given the Biden Administration’s commitment to Home and Community-Based Services (HCBS) and ending Medicaid waitlists, our country will need more and better-trained direct care workers. These home care workers will be vital to the ability of our medically complex and disabled children to survive and thrive in their communities. Direct care workers provide assistance with the tasks of daily living, housework support, activities outside the home, medical support, and other duties.  

Ron Carlson is the Executive Director of the Maryland Regional Direct Services Collaborative. With a background in government, public policy, and public health, Mr. Carlson has a great grasp of the issues our families will face as we build support systems for our loved ones. 

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Tell me about the Maryland Regional Direct Services Collaborative and its mission.

The Collaborative has set its mission to assure the availability of a well-trained direct service workforce to meet the needs of older adults and persons with disabilities across Maryland and DC. The Collaborative got started in 2016 with a regional meeting which brought together key leaders from Maryland Governor’s cabinet, members of the Maryland General Assembly, senior representatives from educational institutions, the hospital and long term care communities, and unions, as well as direct care providers and several provider membership organizations. 

The direct services workforce shortfall is not a new one. It had lingered relatively unattended for nearly fifty years. The call to action issued at the 2016 meeting resulted in an agenda being put in place to tackle the key problems confronted in both Maryland and DC. Corrective steps were directed at enhancing worker wages and benefits, strengthening training and education opportunities, and increasing the supply of workers. That agenda continues to evolve with progress being made on each of the key issues. The Collective has also contracted with a research firm to conduct a comprehensive workforce assessment in our region. 

What are the biggest challenges to building and sustaining a direct support workforce for children and adults with complex medical needs and disabilities?

If we are to see measurable progress toward accomplishing the mission, I see three big challenges that must be tackled.   

First is the imperative to substantially change the levels of public support for the direct services workforce. This change rests primarily, but not exclusively with the Medicaid program. Direct services work is demanding, but the pay is low. An increase in pay levels and the availability of supportive training services are essential. 

Secondly, while public and non-profit stakeholders are actively lending support to enable the frontline workforce, noticeably absent is any expressed interest or involvement on the part of the larger business and corporate communities. While the pandemic has underscored an increased importance on the availability of home and community-based services for employees of business organizations, there is an apparent disinterest on the part of the corporate community to invest and strengthen the direct services workforce as a whole.  Without meaningful support from this part of the private sector, I doubt we’ll see any appreciable change. 

Thirdly, a critically important challenge is that of rebuilding and strengthening training and education programs geared to this frontline workforce. Without more clear and affordable career pathways provided by employer-sponsored internships and apprenticeships, most if not all recruitment and retention efforts will fall far short. One of the building blocks is to enhance the roles carried by the community college. These schools should serve as the centerpiece for training. That is not the case now.      

What can our members do in their states to ensure a robust direct support workforce? 

Drawing on my experience to date, I’ve learned a couple of things. First, if the workforce is to see changes that make a positive difference, it’s important that both the general public and the public policy makers understand the problem in terms they can personally and professionally understand. This means elevating attention as to how having the right workforce available positively affects children, families and the community. For the policy maker who has to decide where and how funds are to be spent, answering the “return on investment” question is core.   

Personal interest stories must be told, retold, and shared via the social networks, the news media, and meetings with legislators either virtually or in-person. The op-ed piece in the Washington Post earlier this month, “My son’s home health worker is the face of infrastructure” is one terrific example. More of these will make a difference. Experience tells us that while legislative change is driven by research and good data analysis, the more powerful change agent is the attention-getting story that touches the policy maker in a very personal way. 

A meeting of the Maryland Regional Direct Services Collaborative [image description: A large group of people sit at tables arranged in a square in a community college meeting room.]

Tell me about the Direct Care Workforce Innovation Program which recently passed the Maryland General Assembly.  What do you hope it will achieve?

A year ago, Senator Guy Guzzone, Chair of the Senate Budget and Taxation Committee, introduced “The Direct Care Workforce Innovation Program.” Due to the shortened legislative session brought on by the pandemic, Senator Guzzone needed to reintroduce the bill this year. It was easily passed by both houses and then brought to enactment with the Governor’s approval in May. 

The legislation will provide a new resource to community-based organizations in the amount of $250,000 each year for the next several years to help them build the needed workforce.  The program will be implemented by the end of this year to allow awards up to $50,000 on a matching basis for at least three years. I see this support substantially helping organizations come up with new ways and means for tackling the challenges they face in both initiating and bolstering their recruitment and retention strategies. Very importantly, and in keeping with the objective of building new approaches, the legislation calls for the coordination of these new programs with educational institutions and with the Maryland Department of Health.  

It is expected the grant announcement launching the initiative will come sometime this fall. Coincident with the announcement, the Collaborative will conduct a webinar to highlight the program and outline how it will be implemented. For more information on the webinar, check our website and sign up for our newsletter. 

What inspired you to become involved in direct services advocacy? 

I became involved as an advocate for change while serving as the Donor Representative for the Paul R. Willging Endowment at the Howard Community College in Columbia, Maryland. The Endowment provided scholarship support for students pursuing health care careers in the care of older adults. It wasn’t long before I learned about the direct care workforce problem. While this end of the workforce delivers nearly 60% of patient care in and outside long-term facilities, direct care has a shortfall of 40%. Having spent my career in public health and health care financing, I knew well the issues confronting the acute care and primary care parts of the system, but was unaware of this part of the delivery system. It was astounding to find that so little attention had been given to direct care issues.   

By setting up the Collaborative and bringing together a strong cross section of the professional, educational, and business communities, both public and private, I thought that we could and would find the ways to close the gap.

How has advocacy given meaning to your life?

Over the past many years, I have worked to highlight and bring to life a social innovation agenda for positive change. I have long been an advocate to challenge the norms, and to argue for and present ideas aimed at strengthening a community’s ability to address problems, especially those struggling to find pathways to a better quality of life. This has included setting up “the business roundtable” to grapple with the tough issues. It has meant serving on state-wide and county level advisory committees addressing issues to improve population health. It has meant conducting community wide needs assessments to identify shortfalls, and highlight areas where communities can target interventions that work. While the challenges are endless, the occasional victories are personally and professionally fulfilling.   

If you could define advocacy in a single sentence, what would it be?

Advocacy is working to bring about those changes in communities that improve the quality of life for those in need.    

[This interview has been edited for concision and length.]

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Ron Carlson has served as the Executive Director of the Maryland Regional Direct Services Collaborative for the past three years. Previously, he served as research associate with University of Maryland Baltimore County’s “The Hilltop Institute,” and was director of the Policy Analysis Center established by the Horizon Foundation. Mr. Carlson was the president and founder of the Institute for Community Health focused on both community and population health improvement. He earlier served as the director of community health with the Center for Health Policy Studies and was senior researcher for the National Academy of Public Administration. Mr. Carlson was a founding member of the Senior Executive Service and held senior health care policy positions in the United States Department of Health and Human Services for more than three decades.  

Emma, a little girl with blonde hair and blue eyes and a trach, and her mom Stacy a blonde haired blue-eyed woman, embrace while wearing blue “Caregiving is Infrastructure Little Lobbyists T-shirts.

In many ways, my family is like any other.  We want our children to grow; to love and be loved; to do well in school, and make their way in the world.  We want them to be okay after we’re gone. But for my family, none of these things are possible without support. Frankly, we wouldn’t survive without Home and Community Based Services (HCBS), specifically, in-home nursing.  

Our twins are joyful, rambunctious, and the lights of my life!  Sara Bean is a nature lover.  She is happiest when she’s splashing in the water or digging in the dirt. Emma lights up the room with her smile, she has surpassed her medical team’s expectations.  When they were born at 28 weeks via emergency c-section, their birthdays were too much to hope for.  

Emma can do great things!  She loves therapeutic horseback riding, and she’s building stamina to play with her twin sister.  One thing she has never done is take an unassisted breath. Emma lives with an artificial airway through a breathing tube as an outcome of their premature birth and prolonged respiratory assistance.  She eats through a feeding tube that was surgically placed when she was 3 months old. 

It’s hard to describe the relentless hypervigilance that comes with an artificial airway.  When it’s dislodged, Emma is immediately in crisis. I’ve seen the light go out in her eyes as we scramble to reinsert her breathing tube.  

We have family and friends who love us and celebrate the girls' milestones with us but only my husband and I are airway-trained, unpaid family caregivers who’ve forged life-saving skills through fire, and her team of in-home nurses who have chosen caregiving as their profession.  All of Emma’s nurses are trained, licenced and capable professionals. Most are women of color and immigrants who provide vital services, yet have been historically undervalued and underpaid. This means some families experience a turnstyle of rotating caregivers, losing important consistency of care.

 I had to leave my career when my girls were born, and I long to return.  For me to be able to get back to work, Emma needs robust support to survive and thrive.  That can only happen by fully addressing the inequities we clearly see exist.  When you hear people say #CaregivingIsInfrastructure, this is what we mean.  

My daughter’s survival depends on Home and Community Based Services being well-funded, implemented, and protected.  Included in the $400 Billion budget in the American Jobs Plan, we need Congress to ensure dedicated funding for the expansion and improvement of these vital services, including increased availability AND resources to ensure that caregiver jobs provide promising career paths, and liveable wages.

I have to admit, it was a tough pill for me to swallow when I came to understand that I am not enough.  Despite my utmost effort, I cannot give Emma and Sara everything they need.  The current state-level patchwork of eligibility, services and funding means that if we need to move for my husband's job or to be closer to family, we could lose access Emma needs to stay home with us - where she belongs. 

Studies confirm that Home and Community-based Services save lives and create better long-term outcomes for children and adults. Access to HCBS affords disabled people of all ages the civil rights they are entitled to - the self-determination to choose where they want to live. Because of the pandemic, we are in a rapidly expanding public health crisis,  and are only beginning to confront the exacerbated inequities and widening gaps in infrastructure our country is facing.  

We need our legislators to protect American families; to provide relief and support; to fix broken systems and do the job we elected them to do.  My daughters are just 7 years old and have long lives ahead of them. With our legislators' urgent commitment to improving infrastructure, in the future we’ll hear more stories of self-determination and fulfillment.

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Stacy Staggs is mom to Emma and Sara and Little Lobbyists Director of Community Outreach.

Ande Kolp (third from left) and her children. [image description: A white-appearing family poses in the living room of their home. Five people stand in a line, arms linked. They wear brightly colored t-shirts: 3 women at center, 2 men on either end.]

Ande Kolp is the Executive Director of The Arc Maryland. Over three decades, Ande has supported people with intellectual and developmental disabilities and their families in various positions within Maryland and Iowa. She holds a Bachelor’s Degree in Music Therapy from the University of Iowa and a Master’s Degree in Special Education with a Concentration in Severe Disabilities from The Johns Hopkins University.

Jeneva Stone is the Little Lobbyists blog manager.

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JS: How did you become an advocate? What do you consider your first act of advocacy?

AK: I’m not quite sure but I think I have always been tuned into equity and inclusion and I believe that drives what I do and how I behave!  Growing up in Iowa, I was fortunate to attend a school that was highly inclusive. I’m fairly sure that was not typical back in the 70s, but I had friends on the spectrum of ability (and disability) and so I had the opportunity to see and live how our differences enrich us. 

As I entered the workforce, I first worked as a Direct Support Professional and held that role for a number of years before moving to Maryland where I did a music therapy internship at Crownsville Hospital Center. That experience changed me. I was deeply saddened and also angered at seeing people locked away in large brick buildings that were referred to as “cottages.”  The conditions … Ah ... I can’t describe it in such a way that would respect the experience of the people who had to live there. I think I found my calling then and there that I wanted to use my time on earth to support the voices of people in their demands to live their best, free lives, with quality community-based supports as needed to do so. 

Ande Kolp [image description: A black & white photo of a white-appearing woman with shoulder-length hair, wearing hoop earrings, a light-colored sweater & a dark v-neck top. She poses seated at a piano with framed photos of artwork above the piano.]

What do you find most satisfying about your current role with The Arc Maryland? 

Prior to coming to The Arc Maryland, I had worked for local chapters of The Arc in Maryland and so I already knew I held the same values and believed in the mission of the organization. The state chapter is different than the local chapters in that we focus more broadly on the needs of all families and all people with Intellectual and Developmental Disabilities (IDD) throughout the state, whether they receive direct services from our local chapters or not. We also support children and get involved with early intervention and education advocacy matters. Most satisfying is probably seeing the outcomes of our grassroots advocacy and being a part of that systems change. 

We have a partnership with the Maryland State Department of Education, Maryland Department of Disabilities, and the Maryland Developmental Disability Council on an inclusive schools and disability awareness initiative called “Together We’re Better.” It is really fulfilling to see how the program has grown in engagement with schools and students, and especially seeing/hearing the reactions of the students during assemblies; when self-advocates talk about their school experiences and the students go out of their way to thank the advocates for raising their awareness.  

The legislative session is highly satisfying too because I have the opportunity to meet and interact with so many advocates and partners as we work through the legislative process and together try to move the dial on disability rights and needed resources.

The Arc of the United States has been integral to the development of the Home and Community-Based Services Access Act (HAA), recently released by the U.S. Congress as draft legislation. Could you give us an overview of the HAA and the effort that’s gone into it?

Sure! This is a discussion draft of a bill that will make Home and Community Based Services (HCBS) mandatory, eliminate waiting lists, and do more to create parity across states around access to HCBS. This bill builds on 70 years of The Arc’s history and efforts to help people with disabilities and older adults access the HCBS they need in order to live in the community with friends and family. The Arc of the United States staff have worked hard with legislators’ offices for over a year, and they are also working on materials to support the campaign that will surround this bill. We are only at the beginning of this effort.

For some background: People with intellectual and developmental disabilities often need some degree of home and community based services (HCBS) which provides them with assistance to eat, to dress, for personal hygiene, and for managing health care or finances. For people with limited incomes, these services can only be obtained through Medicaid.  Unfortunately, in Maryland and many other states, the Medicaid HCBS programs currently have long waiting lists. 

There are an estimated 850,000 people on HCBS waiting lists across the country. Currently, the HCBS services and the waiting lists in each state are not “portable.” This means that people with disabilities who are in services OR on the waiting list in one state cannot move to another state without risking the loss of their services or going to the bottom of the new state’s waiting list. This lack of portability traps people in the states where they live.

Medicaid is technically an institutional insurance. It is used for nursing homes and other long-term care services. The Medicaid waiver services in Maryland (meaning that the requirement that these services must be provided in an institutional setting has been “waived”) support people to receive these services in the community (HCBS). While the institutionally-based services are provided as needed--there are no waiting lists--there ARE waiting lists for the HCBS services! That is because in Medicaid, HCBS services are considered “optional.” This is what we term the “institutional bias” of Medicaid that The Arc and others have advocated for seven decades to change. 

This institutional bias persists even though it is shown in study after study that HCBS services are more cost effective and promote the best quality of life.   

To change our national Medicaid system nationally would require a significant investment.  Federal funding will be needed to support states to build their capacities to eliminate the HCBS waiting lists and to serve everyone in need.

 For the HCBS Access Act (HAA) to be successful, and as part of the capacity building that needs to happen, we are going to need a sufficient workforce to support all of the people who come off the waiting lists. There needs to be ample consideration and effort put into saving the HCBS workforce (Direct Support Professionals also known as DSPs), which is in crisis due to insufficient funding and insufficient recognition. The HAA would address this crisis by increasing pay rates for DSPs, providing training/career path guidance, and recognizing DSPs as the career professionals they are through the Bureau of Labor Statistics. 

In all, the changes this bill would create would finally allow people with disabilities the freedom to move from state-to-state without fear of losing crucial HCBS services. 

What does “draft legislation” mean? When might a bill be introduced in the House or Senate? What can all of us do to help speed the HAA on its way to becoming law?

“Draft legislation” means this is an idea that members of Congress have developed after a long time of taking stakeholder feedback, but that idea is not quite ready for prime time. The sponsors of this “discussion draft” need feedback from constituents and other stakeholders to fine-tune the proposal and ramp-up the tremendous national support that will be needed to get this bill through Congress. Senators Maggie Hassan (D-NH), Sherrod Brown (D-OH) and Bob Casey (D-PA), and Representative Debbie Dingell (D-MI) developed and released this draft, and now it is up to the community of people for whom this is important to advocate and work with the offices for full introduction, hopefully this summer. 

Each of us can help by reaching out to our representatives in Congress. If each of the 93,000 people in Maryland who have IDD (or a family member) committed to contacting just one representative with a personal story about how community services have or will (in the future) impact their lives, that alone would go a LONG way!

How has advocacy given meaning to your life?

For me, the mission gets me out of bed in the morning. I get excited about it and love to see the changes I and we have been a part of effecting. I am so appreciative of all of the lovely people I have met and now know through my work. I guess I just consider myself incredibly lucky that I get to do what I love to do.

If you could define advocacy in a single sentence, what would that be?

Speaking for yourself (or assisting someone to tell their story)--it is helping people to see what you see, what you believe is needed in the community, and collaborating to accomplish something that will benefit us all--like inclusion, human rights, and in the case of the HAA, community for ALL.

Rob and his mom at the U.S. Capitol [image description: A woman wearing a black trench coat kneels next to a young man, seated in a wheelchair, who wears a an orange and black wheelchair cape. The U.S. Capitol is in the background]

In 1998, when my son Rob became disabled at the age of one, I knew nothing about disability services or advocacy or rights. I just knew that I wanted Rob to live at home with us, where any child belongs. Rob was a busy toddler who loved going to the zoo, reading stories, watching Teletubbies, and he absolutely adored Buzz Lightyear.  

Then, over the course of a long weekend, Rob went from 60 mph to 0, due to a sudden-onset genetic condition. After that, Rob could no longer speak, stand, sit or walk by himself. He needed all of his food, hydration, and medication delivered to his stomach by tube. Rob required specialized formula, medical supplies, and equipment. He needed a wheelchair, communication devices, and coverage for his many surgeries and hospitalizations. 

But one thing had not changed - I wanted a good life for Rob: to live with dignity and respect in his community, to attend the public schools and to participate in the same activities that other kids did. Unfortunately, I had no idea how to make that happen. Even a close family member asked me if we’d ever give Robert up. “Never,” I replied.

The answers were Home and Community Based Services (HCBS) and Long-term Supports and Services (LTSS): Medicaid “waiver” programs. “Waiver” means those who qualify don’t have to spend down their assets to ensure their loved ones stay out of institutions and remain in their communities. HCBS helps infants & toddlers, school-aged children, and teenagers & young adults. LTSS assists adults with disabilities through their senior years.

President Biden’s American Rescue Plan includes funding for vital HCBS, and, thanks to House and Senate Democrats, that funding that keeps our kids in their communities is in the bill moving through Congress. HCBS COVID relief includes additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals. The U.S. House of Representatives will vote on the American Rescue Plan at the end of next week, and then the legislation moves on to the U.S. Senate for budget reconciliation, the measure congressional Democrats will use to pass it.  

You can help by contacting your representative and contacting your senator to thank them for including our children’s needs in the American Rescue Plan, and asking them to keep it in. Let them know: 

1. Why we need to reduce waiting lists for Medicaid waivers. 

Despite Rob’s complex medical needs, he was on waiting lists in Maryland for close to a decade--as are many children, right now. Private insurance does not pay for all the home medical services that Medicaid provides. 

All U.S. states have Medicaid waivers for children. Many have adopted a specific child waiver known as a Katie Beckett waiver, named for the little girl who, in 1981, inspired Ronald Reagan to request the first changes to Medicaid that allowed children like Katie to leave hospitals and come home. Yet, across the country, states have a limited number of slots for these waivers, with many children on waiting lists, or “registries,” so the promise made to Katie Beckett is not yet a reality for thousands with complex medical needs and disabilities.

2. Why we need crucial funds for home health care workers and direct support professionals, including wage increases and PPE. 

HCBS and LTSS also pay for personal supports that private insurance does not cover. These include home nursing and health aides. In addition, HCBS programs provide direct support professionals (DSPs) to help people with disabilities look for jobs, attend college, and learn community living skills. 

 But how can our families hold onto staff, especially during the pandemic, when Medicaid wages are so low? Many DSPs are paid less than a living wage. Home nurses and health aides often make more in hospital-type settings. Our children cannot survive and thrive without these extra sets of hands.

3. Why we need an ongoing focus on the needs of people with disabilities throughout their lifespan. 

Rob is now 23 and benefits from two HCBS waivers in Maryland, receiving help from home nurses and inclusion aides. With this support, Rob can go to the movies (he loves Star Wars and the Marvel Comic Universe), or to Capitol Hill to advocate for his rights, or attend a community college class. 

But my family is still fighting for the LTSS supports Rob will need to keep him out of an institution as he ages, and we’re not alone. Medicaid is a state/federal program, and HCBS and LTSS programs are options states can choose to establish; they are not required. Many Medicaid programs are chronically underfunded. Some states do not use the full range of federal Medicaid benefits to serve their populations. As a result, many children and young adults with disabilities are still forced into institutions, nursing homes, and intermediate care facilities. 

In 1990, seven years before Rob was born, President George Bush signed the Americans with Disabilities Act (ADA), which created, most visibly, wheelchair ramps and curb-cuts, as well as many other rights and accommodations for people with disabilities. 

One year after Rob became disabled, in 1999, the U.S. Supreme Court settled the case Olmstead vs. L.C., aka, “the Olmstead Decision.” Based on rights the ADA established, the Court ruled states could not segregate people with disabilities in institutions. States must instead provide community living supports to those who want them. 

We must think of HCBS as a work-in-progress and build upon the vital work of disability advocates over the last 40 years. We hope to inspire more advocacy on your part. Let’s make the world a better place for our families!

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Jeneva and Rob Stone live in Maryland. Rob lives at home with his mom, dad, sibling, and two cats and a dog. He is a disability rights activist and a member of Little Lobbyists. Jeneva is the Little Lobbyists blog manager and a writer.

Rob and his sister as children, waiting for the school bus.

In 1998, when my son Rob became disabled at the age of one, I knew nothing about disability services or advocacy or rights. I just knew that I wanted Rob to live at home with us, where any child belongs. Rob was a busy toddler who loved going to the zoo, reading stories, watching Teletubbies, and he absolutely adored Buzz Lightyear.  

Then, over the course of a long weekend, Rob went from 60 mph to 0, due to a sudden-onset genetic condition. After that, Rob could no longer speak, stand, sit or walk by himself. He needed all of his food, hydration, and medication delivered to his stomach by tube. Rob required specialized formula, medical supplies, and equipment. He needed a wheelchair, communication devices, and coverage for his many surgeries and hospitalizations. 

But one thing had not changed - I wanted a good life for Rob: to live with dignity and respect in his community, to attend the public schools and to participate in the same activities that other kids did. Unfortunately, I had no idea how to make that happen. Even a close family member asked me if we’d ever give Robert up. “Never,” I replied.

The answer is Home and Community Based Services (HCBS): Medicaid “waiver” programs established by each state. “Waiver” means, ironically, that the eligible person is waiving their right to institutional care, the very situation those with disabilities want to avoid. Medicaid, though, guarantees institutional care for those who qualify, while those who want HCBS are often put on long waiting lists. If a child qualifies, getting a waiver slot means that families don’t have to spend down their assets to ensure their loved ones remain in their communities, where they belong.

But these Medicaid services need funding, right now, to help families like ours. We need everyone’s help to reach our legislators. The Biden Administration has made providing additional funds to HCBS programs a priority, but Congress has yet to act.

In May, the U.S. House of Representatives passed a third COVID relief bill, the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, which would provide additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals. The U.S. Senate is just beginning their own discussions on a third COVID relief bill. You can help by contacting your senator and letting them know it’s critical that they include support for the disability community from the HEROES Act:

1. We need to reduce waiting lists for Medicaid waivers. 

Despite Rob’s complex medical needs, he was on waiting lists in Maryland for close to a decade--as are many children, right now. Private insurance does not pay for all the home medical services that Medicaid provides. 

All U.S. states have Medicaid waivers for children. Many have adopted a specific child waiver known as a Katie Beckett waiver, named for the little girl who, in 1981, inspired Ronald Reagan to request the first changes to Medicaid that allowed children like Katie to leave hospitals and come home. Yet, across the country, states have a limited number of slots for these waivers, with many children on waiting lists, or “registries,” so the promise made to Katie Beckett is not yet a reality for thousands with complex medical needs and disabilities.

2. We need crucial funds for home health care workers and direct support professionals, including wage increases and PPE. 

HCBS also pay for personal supports that private insurance does not cover. These include home nursing and health aides. In addition, HCBS programs provide direct support professionals (DSPs) to help people with disabilities look for jobs, attend college, and learn community living skills. 

 But how can our families hold onto staff, especially during the pandemic, when Medicaid wages are so low? Many DSPs are paid less than a living wage. Home nurses and health aides often make more in hospital-type settings. Our children cannot survive and thrive without these extra sets of hands.

3. We need an ongoing focus on the needs of people with disabilities throughout their lifespan. 

Rob is now 23 and benefits from two HCBS waivers in Maryland, receiving help from home nurses and inclusion aides. With this support, Rob can go to the movies (he loves Star Wars and the Marvel Comic Universe), or to Capitol Hill to advocate for his rights, or attend a community college class. 

But my family is still fighting for the supports Rob will need to keep him out of an institution as he ages, and we’re not alone. Medicaid is a state/federal program, and HCBS programs are options states can choose to establish; they are not required. Many Medicaid programs are chronically underfunded. Some states do not use the full range of federal Medicaid benefits to serve their populations. As a result, many children and young adults with disabilities are still forced into institutions, nursing homes, and intermediate care facilities. 

In 1990, seven years before Rob was born, President George Bush signed the Americans with Disabilities Act (ADA), which created, most visibly, wheelchair ramps and curb-cuts, as well as many other rights and accommodations for people with disabilities. 

One year after Rob became disabled, in 1999, the U.S. Supreme Court settled the case Olmstead vs. L.C., aka, “the Olmstead Decision.” Based on rights the ADA established, the Court ruled states could not segregate people with disabilities in institutions. States must instead provide community living supports to those who want them. 

We must think of HCBS as a work-in-progress and build upon the vital work of disability advocates over the last 40 years. We hope to inspire more advocacy on your part. In future posts on HCBS and LTSS, we’d like to consider the following questions: 

1.     How can I keep my young child at home?

2.     How can I keep my school-aged child in their community?

3.     How will my child be able to grow up and live independently?

Ask your legislators about HCBS! Give them examples of how the world could be a better place for our families!

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Jeneva and Rob Stone live in Maryland. Rob lives at home with his mom, dad, sibling, and two cats and a dog. He is a disability rights activist and a member of Little Lobbyists. Jeneva is the Little Lobbyists blog manager and a writer.