Enabling and empowering: Absent state support, local agencies fill the gap for people with disabilities
The Frederick News-Post
by Nancy Lavin
September 16, 2017
Michelle Sclater fully anticipated the responsibilities that caring for her newborn son, Jake, would entail.
She didn’t expect to still be changing his diaper, feeding him and trying to decipher his sounds and nonverbal cues 14 years later. Jake has Angelman syndrome, a rare neuro-genetic disorder that causes developmental delays, balance problems, speech difficulty and seizures. He also suffers from a birth defect known as agenesis of the corpus callosum, which means he was born without the part of his brain that connects the two hemispheres.
As a result of these two rare but completely unrelated diagnoses, Jake cannot talk or communicate beyond pointing and making sounds. He has learned to walk with a walker, but still needs to be lifted or carried sometimes. He requires constant care and supervision, and will for the rest of his life.
His conditions also necessitate an array of medical services and treatments that are costly and require traveling outside the state to specialists.
When Jake was 3, Sclater applied for financial assistance for caregiving and treatment through the Maryland Department of Health’s Developmental Disabilities Administration. She didn’t expect her request would be met soon; she’d heard about the long waiting lists for services.
Stevenson Completes 17-year Effort to Acquire 117 Acres at Rosewood
The Baltimore Sun
by Michael Dresser
June 7, 2017
Stevenson University in Owings Mills completed a 17-year effort Wednesday as it won final approval of a deal for the state to transfer 117 acres of the former Rosewood Center to the school for its future expansion.
The Board of Public Works unanimously approved the sale of most of the grounds of the longtime institution for the developmentally disabled for $1.
The board’s three members — Gov. Larry Hogan, Comptroller Peter Franchot and Treasurer Nancy K. Kopp — acted after hearing pleas from advocates for the disabled that they not be forgotten as the university moves forward with plans to redevelop a site where generations of developmentally disabled residents were housed and in many cases neglected or even abused.
Emergency Evacuation Planning for Students with Disabilities
by Lori Scott RN, BSN, MS
March 20, 2017
Imagine, for a moment, that you are strapped to a wheel chair on the landing of a stairwell while of your peers and school staff exit the building, leaving you behind!
In this era of threats of violence and shootings along with fire and weather emergencies, the paramount need is effective emergency evacuation plans for students with disabilities.
Schools must design plans for the individual needs of students, including those who:
- have physical disabilities
- have sensory disabilities
- may lack understanding of a situation
- are unable to act quickly
Although Title III of the ADA broadly addresses “discrimination on the basis of disability in the activities of places of public accommodation such as restaurants, movies and schools,” most schools have evacuation procedures that call for a person with a disability to shelter in place on the landing of a stairwell and wait for EMS rescue.
School personnel and visitors with disabilities also need protection.
ABC 2 News
by Mallory Sofastaii
February 28, 2017
ANNAPOLIS, Md. – For years, Lori Scott has worked to get a plan in place so that her 14-year-old daughter Cassidy will be evacuated with her peers.
Cassidy requires a wheelchair to get around. The personalized evacuation plan for Cassidy is to wait with a school staff member in the upstairs stairwell until emergency services arrive. The Howard County Public School system has said this plan was approved by the county fire department and follows national standards, but as a parent it doesn’t sit right with Lori.
Maryland House committee to hear testimony for End of Life Options Act
The Washington Post
by Ovetta Wiggins
February 19, 2017
A joint House committee is scheduled to hear hours of what should be emotional and thought-provoking testimony on Friday on whether Maryland should become the sixth state in the country to allow terminally-ill patients to take their own lives.
The hearing is the first this year on the End of Life Options Act, a bill that would allow a doctor to prescribe life-ending drugs to someone who physicians say has six months or less to live and is able to self-administer the medication.
Maryland Legislators Again Consider a Bill to Legalize ‘Aid-in-Dying’ Medication
by Natalie Schwartz
February 16, 2017
In 2014, Alexa Fraser’s 90-year-old father successfully ended his life with a gun to the head after two failed suicide attempts.
Her father, whom Fraser described as a “fiercely independent person,” suffered from Parkinson’s disease, a progressive movement disorder marked by involuntary tremors and slowed movement. His condition had worsened and he feared he would be kept alive beyond his will in a nursing home so he decided to take action, Fraser said.
Since his death, Fraser has been on the forefront of Maryland’s legal aid-in-dying movement, which advocates to allow patients with a terminal diagnosis to receive a lethal prescription to painlessly end their life.
Mother outraged by school evacuation plan for disabled student
ABC 2 News
by Mallory Sofastaii
January 26, 2017
ELLICOTT CITY, Md. – A mother has started a movement to get her disabled child a new evacuation plan. The one provided by the school states that in the event of an emergency, 14-year-old Cassidy Scott is to be brought to an upstairs stairwell where she would wait for first responders.
The Howard County Public School System says it worked with the fire marshal’s office and that this plan meets national standards, but no matter how safe it may be deemed it’s not what Lori Scott, Cassidy’s mother, wants to happen if there’s ever a real emergency.
Aging parents worry about who will care for their disabled children
The Washington Post
August 29, 2016
Ever since a caregiver force-fed her with a spoon when she was 4, Caroline Munro has not let anyone but her mother feed her.
The 22-year-old has cerebral palsy and an intellectual disability. She doesn’t speak, and she functions at a preschool level. Her mother, Beth Munro, feeds her with a fork or with her hand at their home in Rockville.
As Beth Munro ages — she’ll be 68 in October — she wonders who will care for Caroline when she’s no longer around. But she may never know. Caroline is on a Maryland waiting list for additional Medicaid services for disabled people. The list is thousands of names long, and as in many states, names on the Maryland list often stay on it until a caregiver falls ill or dies.
Hearing on End of Life Act draws crowd of supporters, opponents
February 19, 2016
ANNAPOLIS, Md. —
A standing-room-only crowd packed the largest hearing room in Annapolis Friday for a hearing on the End of Life Act. The bill would allow terminally ill residents to end their lives on their own terms with drugs prescribed by a doctor.
Group tweaks bills to allow terminally ill people to end their lives
January 28, 2016
A group that supports allowing terminally ill people to end their own lives is trying again after legislation failed last year, but there are some changes from the previous legislation.
Legislature considers new options for terminally ill
February 19, 2016
State legislators are considering two proposals that would affect people facing terminal illness — specifically those with less than a year to live.
One bill, from Sen. Bryan Simonaire, a Republican from Anne Arundel County, would allow patients with less than a year to live to try experimental drug treatments.
End-of-Life Option bill sparks emotional debate about personal rights, suicide
February 21, 2016
In an emotionally charged, eight-hour hearing Friday, more than 30 advocates made heartfelt pleas to lawmakers in an effort to make Maryland the sixth state to allow terminally ill patients to take their own lives with the assistance of lethal drugs.
Maryland supporters of right-to-die measure try again
January 28, 2016
ANNAPOLIS, Md. (AP) – Maryland supporters of allowing terminally ill residents to legally end their lives with drugs prescribed by a doctor said Thursday they are trying again after the measure stalled last year.
Physician-assisted suicide sees first major public debate of 2016
The Catholic Review
February 20, 2016
ANNAPOLIS – You stop eating six hours before you want to die. With one hour to go, you ingest a pill that enhances the body’s absorption faculties, and you take something to keep yourself from throwing up. Finally, you stir a lethal powder into water – or something sweet, to offset the bitter taste – and drink it all within two minutes. You fall asleep in about five minutes. You never wake up.
At the request of Del. Deborah Rey, the culmination of the physician-assisted suicide process was described by Kim Callinan, chief program officer of Compassion and Choices, the national organization pushing for its widespread legalization.
The first major public debate on the topic in the 2016 Legislative Session brought eight hours of testimony to a Feb. 19 joint hearing with the House of Delegates Judiciary Committee and Health and Government Operations Committee.
Advocates push for phase out of subminimum wages for workers with disabilities
February 10, 2016
Disabilities rights groups called on lawmakers Wednesday to support a bill that would eventually eliminate a sub-minimum wage law that discriminates against employees with disabilities.
The bill, referred to as the Ken Capone Equal Employment Act, HB 420, would prohibit the Commissioner of Labor and Industry from allowing sheltered workshops and work activities center employers to pay workers with disabilities less than the minimum wage.
Law would end sub-minimum wages for disabled
The Star Democrat
April 14, 2016
ANNAPOLIS — During Mat Rice’s time as a student at the Maryland School for the Blind, the disability advocate said he would work at a place openly referred to as “the workshop.”
Rice, who has spastic cerebral palsy and is legally blind, said he would crush cans and shred paper when in the workshop. Each day, he said, he received a piece rate wage based on the amount of cans and paper he would get through, earning about 10 cents a piece and “definitely” falling below federal minimum wage of of $7.25 an hour.
At first, Rice thought the practice was confined solely to the school. But once Rice started working with disability rights groups, he said, he learned it was legal for many institutions to pay their workers with disabilities a sub-minimum wage.
But the Minimum Wage and Community Integration Act — a pair of bills that passed both the Maryland House and Senate with wide, bipartisan majorities — aims to end that practice.
Movie night for kids with developmental disabilities
The Baltimore Sun
A special movie night for kids with developmental disabilities at Bengies Drive-In, organized as a fundraiser for The Arc of Maryland.
Maryland Gov. Larry Hogan blasts state’s ‘reckless’ spending
The Washington Times
March 8, 2016
ANNAPOLIS | Gov. Larry Hogan criticized the General Assembly Tuesday for its “reckless” spending while Democrats said they are not keen to give him more power over the state budget, the latest tense exchange over budgetary priorities between the first-term Republican governor and a Democratic-controlled legislature.
Mr. Hogan urged Democrats to advance a bill that would limit mandated spending in years when the state’s revenue is less than expected, which the House Appropriations Committee considered Tuesday afternoon. The legislation would give the governor’s office greater control over how to spend funds, which he said will offer some leeway when the state hits an economic rough patch.
Advocates hope Hogan releases funds for developmentally disabled
May 9, 2015
The Marierose family has been waiting for help.
Dilsia, 53, works the day shift at a post office; her daughter, Ninotchka, 27, worked the night shift before she was promoted to days.
The mother and daughter would take turns watching Dilsia’s son, Joseph, a 24-year-old with hydrocephalus. The condition leaves Joseph developmentally disabled and unable to care for himself.
The District Heights family said they have been on the state’s Developmental Disabilities Administration, or DDA, waiting list for four years and are listed as in urgent need.
But the funding that would get Joseph into a day program hasn’t come.