Judith “Judy” Heumann (1947-2023)

Judy Heumann, widely regarded as “the mother” of the disability rights movement, passed away in Washington, D.C. this weekend unexpectedly. We deeply mourn the loss of the woman who was a beacon of light for so many, with a fiery tenacity and strength to speak up and out for herself and millions of others in her lifetime.

Judy is quoted as once saying, “Some people say that what I did changed the world, but really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.”

Judy was instrumental in the development and passage of national disability rights legislation, including Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA).

We at The Arc Maryland had the pleasure of talking to Judy a few years ago about her past and ongoing Disability Rights work. Her presence as our Convention Plenary Speaker is regarded as one of the bright spots of a difficult year as she came to us virtually during the pandemic.

Judy is survived by her husband, Jorge Pineda, and many other members of both the Heumann and Pineda families. Memorial Services will be held virtually and in person on Wednesday, March 8th at 10 AM ET at Adas Israel Congregation, 2850 Quebec St. NW, Washington, DC 20008. Please click below for more information.

We will miss you Judy. Rest in Power.

Link to Bill Text: HB1149/SB0622

Position: Support with Amendment

Current Status:

HB1149 in House HGO hearing 3/7 at 1 PM

SB0622 in Senate B&T hearing 3/7 at 1 PM



This bill clarifies certain intentions of the 2022 End the Wait legislation. It would authorize certain Medicaid funding to be used for hiring and retaining providers in certain waiver programs, and alter the uses of certain funding appropriated to the Dedicated Purpose Account in the fiscal year 2023 budget bill.

The Sponsors have agreed to an amendment to clarify how the money in the dedicated purpose account may be spent- that the funding shall go toward providing services for people on waiting lists and may also be used to support providers to expand their capacity to serve people.

Link to Bill Text: HB1176

Position: Support

Current Status: In House HGO hearing 3/8 at 1 PM

This bill would establish the 9-1-1 Registry Program to authorize individual adults, parents or guardians of minor children, or guardians of individuals with special needs to register with a local jurisdiction or local 9-1-1 call center in order to alert first responders of certain behaviors, diagnoses, or traits that individuals with special needs may present during encounters with first responders. It would require local jurisdictions and local 9-1-1 centers to create 9-1-1 registry programs meeting certain characteristics and have procedures for adding and removing names from the registry and periodic registry clean-up.

We believe this bill incorporates advocate feedback and addresses previous concerns. It would provide a voluntary opportunity for people with IDD or their parents to be a part of a registry program to self-disclose information that they feel would be helpful for police and other first responders to have. It would also enable parents to upload and update recent photos of their loved ones. This can be very helpful for individuals who exhibit certain behaviors when stressed, have sensitivities elevated sound or touch, individuals who do not use words to effectively communicate, and individuals who may wander. There are similar registries in Howard County and Southern Maryland that have been effective.

This does not completely solve our issues with first responder response, but adds one more tool to our toolbox and helps improve communication and collaboration between first responders and families.

If you are a person with disabilities or a parent who wants this optional service or already benefits from the special needs registries in certain counties, please consider signing up to testify for this bill. Testimony is due today, March 6th by 3 PM. Please contact Ande Kolp at AKolp@thearcmd.org if you need assistance with testimony or signing up.

Link to Bill Text: HB0933/SB0845

Position: Letter of Information - Requesting 2 Amendments

Current Status:

HB0933 in House HGO hearing 3/10 at 1 PM

SB0845 in Senate FIN hearing 3/7 at 1 PM



This bill would legalize medical assistance in dying; authorizing an individual to request aid in dying by making certain requests; establishing requirements and prohibitions governing aid in dying, including requirements related to requests for aid in dying, consulting physicians, mental health assessments, the disposal of drugs prescribed for aid in dying, health care facility policies, and the effect of aid in dying on insurance policies; authorizing a pharmacist to dispense medication for aid in dying only to certain individuals under certain circumstances; etc.

It is the position of The Arc US to oppose legislation such as this due to historically disparate, inequitable healthcare for people with IDD, a persistent lack of understanding regarding prognosis for people with certain conditions, and fears related to denial of healthcare due to misunderstandings about quality of life of people with IDD. However, in Maryland, our membership is divided on the issue, with some wanting to have this option. There is momentum this session for this legislation to pass, but it should only be considered with adequate protections and data provisions.

SB045 components and safeguards address several of our previously voiced concerns. However, there are two areas in which we will request changes to further strengthen safeguards. These proposed changes mirror amendments made to the 2019 version of this bill that narrowly missed passing the Senate. 

One amendment stipulates that the consulting physician and or mental health professional may not be in the same practice as the attending physician. This is important as we are not aware of a situation where doctors from the same practice have disagreed with the opinion of another doctor in their practice. It is unlikely to happen and why, when someone wants a second opinion, they typically do not shop for that second opinion in the same practice. To truly be a safeguard, we believe the amendment should be identical to that on page 6 of the 2019 bill. While the opponents may consider this a barrier, we do not see it as a hindrance but rather a necessary practice, as we are talking about an irreversible action, we should have this safeguard in place.

We also request an amendment to collect and disaggregate data regarding the use of this option. We have concerns there will be disparate use of this option by people with disabilities (in addition to other marginalized populations). Research tells us that a high percentage of people with disabilities feel a loss of bodily autonomy and a burden to their loved ones. These feelings are at least two reasons people have stated for choosing medical aid in dying in other states. Other states have failed to collect this data. We believe it is critical that Maryland commit to keeping an eye on who/what demographics of people are accessing this option. This information can inform future, targeted safeguards, training, interventions/healthcare changes, etc. The wording that was included in the 2019 bill as amended is what we request be added to the current bill.

If you plan to testimony in the Senate hearing for this bill, please consider referring to the two amendments we want. Testimony is due today, March 6th by 3 PM. Please contact Ande Kolp at AKolp@thearcmd.org if you need assistance with testimony or signing up.

SB0926 - County Boards of Education - Due Process Proceedings for Children With Disabilities - Burden of Proof

Link to Bill Text: SB0926

Position: Support

Current Status: In Senate EEE hearing 3/15 at 1 PM

This legislation is one of a number of bills introduced this session that would shift the burden of proof from families to the schools in special education due process proceedings. If passed, the change in law would require a county board of education to bear the burden of proof in due process proceedings that initiate from a due process complaint (regarding the provision of special education services for a program for a child with disabilities).

There is growing concern from teachers that an additional burden would be placed on them, but data from other states that shows no additional burden on teachers. We included this information in other testimony for Burden of Proof legislation.

We are looking for parents and teachers who would be interested in submitting testimony and testifying in person or virtually. Sign-up is next Tuesday, March 14th between 8 AM and 3 PM. Please contact Ande Kolp at AKolp@thearcmd.org if you need assistance with testimony or signing up.

SB0811 - School Discipline - Behavioral Health and Safety - Data Collection and School Resource Officers

Link to Bill Text: SB0811

Position: Support

Current Status: In Senate EEE hearing 3/14 at 1 PM

This is a bill from a previous session that did not make it through the legislative process in time. This important bill would require a different way for MSDE to report on discipline-related data in an electronic spreadsheet format for the Department's website, make the data available to the public, and report certain discipline-related information each year. It will strengthen efforts to promote data transparency and accessibility in the State and extend reporting requirements to include alternative schools, alternative programs, and public separate-day schools. The bill also prioritizes the reporting of disproportionality in discipline.

Currently, data on school discipline is very hard to find in Maryland. The web-based "Maryland Report Card", includes a link to a spreadsheet with school-level data reported as frequencies and the percentage of total for various subgroups, but does not report on

disproportionalities. For example, a district may suspend 10 students with disabilities over the course of the year. That may not seem like a lot, but if the enrollment of students with disabilities is just 50 students, that means that 20% of all students with disabilities were suspended.

Although MSDE currently collects and disseminates school discipline data, this bill will strengthen reporting practices, help to identify gaps and abuses, and provide a better method of identify high suspending schools.

SB0625 - Maryland Medical Assistance Program and Maryland Children's Health Program - Continuous Eligibility

Link to Bill Text: SB0625

Position: Support

Current Status: In Senate FIN hearing 3/14 at 1 PM

This bill would require the Maryland Department of Health, subject to certain conditions, to adopt 12-month continuous eligibility for children under the Maryland Medical Assistance Program and Maryland Children's Health Program. It would also require the Department, subject to certain conditions, to adopt 24-month continuous eligibility for both adults and children under the Maryland Medical Assistance Program and Maryland Children's Health Program under certain circumstances.

Save the Date: The Arc Maryland Statewide Convention and Awards Banquet - May 23rd

Mark your calendars for May 23rd! Our Convention & Awards Banquet is back once again at Turf Valley Resort in Howard County! This is your opportunity to showcase your business, organization, or product for an anticipated 300 self-advocate, family member, professional, legislative leader, and partner affiliate attendees! Registration will open soon, but in the meantime, check out our awards nominations, presenter, exhibitor, and sponsorship opportunities below.

Tuesday, March 7th at 1:00 PM in House EMC

• HB0988 - Family and Medical Leave Insurance Program - Modifications

Tuesday, March 7th at 1:00 PM in House HGO

• HB0685 - Medical Cannabis - Employees in Health Care Settings Caring for Qualifying Patients - Exemption
• HB0725 - Maryland Medical Assistance Program, Maryland Children's Health Program, and Community First Choice Program - Reimbursement of Service Providers
• HB1149 - Medicaid Waiver Programs – Waitlist and Registry Reduction (End the Wait Act)

Tuesday, March 7th at 1:00 PM in House W&M

• HB0926 - Election Law - Polling Places - Establishing Voter Identity (Voter Privacy Act of 2023)
• HB0943 - Election Law – Voter Registration List – Absentee Voters (Absentee Ballot Transparency Act of 2023)
• HB1216 - Election Law - Voting - Proof of Identity

Tuesday, March 7th at 1:00 PM in Senate B&T

• SB0622 - Medicaid Waiver Programs – Waitlist and Registry Reduction (End the Wait Act)

Tuesday, March 7th at 1:00 PM in Senate EEE

• SB0893 - Maryland Educator Shortage Act of 2023
• SB0913 - Publicly Funded Full-Day Prekindergarten Program - Tier I Child - Alteration of Definition

Tuesday, March 7th at 1:00 PM in Senate FIN

• SB0582 - Behavioral Health Care - Treatment and Access (Behavioral Health Model for Maryland)
• SB0604 - Maryland Medical Assistance Program – Provider Agencies and Personal Care Aides – Reimbursement and Wages

Tuesday, March 7th at 1:00 PM in Senate JPR

• SB0845 - End–of–Life Option Act (The Honorable Elijah E. Cummings and the Honorable Shane E. Pendergrass Act)

Wednesday, March 8th at 1:00 PM in House HGO

• HB1141 - State Information Technology – Social Media Applications – TikTok Prohibition
• HB1144 - State Government - Equal Access to Public Services for Individuals With Limited English Proficiency - Modifications
• HB1176 - Voluntary 9-1-1 Registry for Individuals Needing Special Assistance

Wednesday, March 8th at 1:00 PM in House W&M

• HB1091 - Education - Screening Requirements for Students With Reading Difficulties - Alterations
• HB1114 - Education - Prohibited Behavior on School Grounds and Property - Application
• HB1164 - Public Schools - Expanded American History - Development of Content Standards and Implementation
• HB1222 - State Department of Education - Division of Rehabilitation Services - Funding and Staffing

Wednesday, March 8th at 1:00 PM in Senate B&T

• SB0735 - Workgroup to Study the Wages of Education Support Professionals

Wednesday, March 8th at 1:00 PM in Senate JPR

• SB0459 - Correctional Services - Restrictive Housing - Limitations (Maryland Mandela Act)

Thursday, March 9th at 1:00 PM in House HGO

• HB1217 - Maryland Medical Assistance Program and Health Insurance – Required Coverage for Biomarker Testing

Thursday, March 9th at 1:00 PM in Senate FIN

• SB0523 - Medical Cannabis - Employees in Health Care Settings Caring for Qualifying Patients - Exemption

Friday, March 10th at 1:00 PM in House HGO

• HB0933 - End–of–Life Option Act (The Honorable Elijah E. Cummings and the Honorable Shane E. Pendergrass Act)

Friday, March 8th at 1:00 PM in Senate FIN

• SB0608 - Human Services - Maryland Statewide Independent Living Council

Tuesday, March 14th at 1:00 PM in House HGO

• HB1155 - Workgroup on Establishing a Youth Codesigned Integrated Behavioral Health Model
• HB1157 - Maryland Medical Assistance Program – Employed Persons with Disabilities Program – Eligibility

Tuesday, March 14th at 1:00 PM in Senate EEE

• SB0567 - Elections - In-Person Voting - Proof of Identity
• SB0750 - Election Law - Voting - Proof of Identity
• SB0811 - School Discipline - Behavioral Health and Safety - Data Collection and School Resource Officers

Tuesday, March 14th at 1:00 PM in Senate FIN

• SB0572 - Maryland Medical Assistance Program - Employed Individuals With Disabilities
• SB0625 - Maryland Medical Assistance Program and Maryland Children's Health Program - Continuous Eligibility
• SB0688 - Maryland Medical Assistance Program – Employed Persons with Disabilities Program – Eligibility

Wednesday, March 15th at 1:00 PM in Senate EEE

• SB0878 - Voting Rights Act of 2023 - Counties and Municipalities
• SB0926 - County Boards of Education - Due Process Proceedings for Children With Disabilities - Burden of Proof

Wednesday, March 15th at 1:00 PM in Senate FIN

• SB0805 - Maryland Medical Assistance Program and Health Insurance – Required Coverage for Biomarker Testing

Friday, March 17th at 1:00 PM in House HGO

• HB1146 - Maryland Medical Assistance Program - Adult and Pediatric Dental Services - Review of Reimbursement Rates