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.