Care for the Carer

When Kingsville resident Danielle Rosier’s son Gianni was only six months old, his pediatrician sent him for a chest X-ray because he was breathing rapidly. The doctor’s call the next day terrified her.

“He said, ‘It appears that his heart is enlarged. I want you to get to the ER at Johns Hopkins so a pediatric cardiologist can see him now,’” Rosier recalls. “I started flipping out.”

Gianni’s heart was fine. But after more testing, he was diagnosed with a nonprogressive type of muscular dystrophy, meaning he might gain strength, but wouldn’t lose more over time.

Rosier recalls it being difficult for her and her former husband. “I went through a dark spot,” she says.

She ended up turning to the priest who performed her wedding for guidance. He helped so much that Rosier suggests if caregivers of those with special needs want support that they turn to their religious or spiritual advisors.

Having spent a lot of time over the years at Johns Hopkins Children’s Center, the Rosiers found out about a program for Rare and Expensive Case Management (REM). Through it, Gianni was eligible to receive 90-plus hours a week for nursing assistance to come and help with his care.

“We could get it during the day, if we worked, or even at night,” she explains.

Although she didn’t want it initially at night, Rosier realized she had sleep deprivation and finally used the nursing help when needed. Gianni still receives the REM benefits today, even though he has graduated from high school and is taking online college classes.

Patience and Time

For Lauraville residents Chris and Val Benzing, being parents to their son, PJ, who has autism, can be a full-time job.

“With lots of overtime,” says Chris Benzing. “It takes patience and time. It also takes making sure that our other son, Scott, hasn’t been slighted. (Scott, 23, doesn’t have autism.)

“Much of what I have done and I do, is with and for my family. My sons need attention in different ways, and it’s hard to not short one or the other, even as they grow into men,” says Benzing.

What their family can or can’t do together is based upon what PJ, 27, can tolerate.

“We cannot fly anywhere. We can’t do many spur-of-the-moment things. Everything needs to be routine, on a schedule, and announced well in advance,” explains Benzing. “’New things are hard to start because they haven’t been part of the routine for 20 years. We learned to love the drive-in movie theater so we could see things as a family.

If PJ isn’t cooperating because of crowds or noise, one of us—or all of us—has to leave that event. Still, we have found joy in doing things as a family and celebrate those things even more than a ‘typical’ family would.”

Finding Support

For support as a caregiver, Benzing has suggestions. “Find your tribe and stay engaged with the disability community that fits their needs as well as your own family/friend network,” he says. “Having people who know you, understand you, and stick by you, but also people who know what it is to have a child with extensive needs is important—these two groups may overlap or they may be completely separate from each other.”

Rosier says that working with social workers or nurses at the hospital your child goes to is crucial.

“Reach out to the staff because they will help you,” she says.

She adds that a lot of programs will seem like they’re either not good or you can’t apply for them because of your income. “But don’t give up,” Rosier says. “We weren’t low-income, so a lot of programs for Gianna with his disability weren’t available. But the social worker and the nurses on his team realized what we were eligible for. Reach out to whatever is available and pursue it.”

Benzing recommends reaching out to Mt. Washington Pediatric Hospital as well as the Kennedy Kreiger Institute. “They have services,” he says.

And your pediatrician should be able to refer you to either place.

In addition, check with the Maryland State Department of Education (MSDE), Social Security Administration, and Medicaid, which may help paying for services.

Parents or caregivers can also contact the Developmental Disabilities Administration, the Arc, the Council for Exceptional Children, The League for People with Disabilities, and any nonprofit that is specifically focused on your child’s disability.

“Advocate for your child,” says Benzing. “That doesn’t mean you know everything, but that you know your child better than any ‘expert’ out there. What is right for another family isn’t right for you. There isn’t a one-size-fits-all approach. Don’t be afraid to ask questions, and ask if what you would like to see can happen. It may not be possible, but you won’t know that until you ask.” She continues, “If every decision you make is one of love and caring for your child, you can never go wrong.”

Disability Guide

Looking for resources for yourself or your loved one? Here are some organizations in the area that provide diverse experiences and assistance to individuals with disabilities:

The Arc Baltimore

With a legacy of service since 1949, The Arc Baltimore offers a wide array of resources for those with disabilities, ranging from day programs to community living to employment services and more.
(410) 296-2272, thearcbaltimore.org

Autism Society of Baltimore-Chesapeake (ASBC)

This organization offers experiences that are heavily focused on building community among those with autism, as well as among parents and caregivers. They offer a monthly support group specifically aimed at adults with autism that gives people a space to talk with others who understand them and work through issues that they may be facing. Other support groups and activities are available for individuals and their family members/caregivers. ASBC also provides recommendations for other local resources if they think something might meet an individual’s needs.
(410) 655-7933, baltimoreautismsociety.org

Center for Autism at Sheppard Pratt

Sheppard Pratt offers individualized care for people with autism through adulthood. Medication, therapy, job training, inpatient care, and housing are just a few of the resources available to those who choose to utilize this facility. This program does not take insurance; however, some costs might be paid back through certain mental health coverage plans.
(410) 983-5000, sheppardpratt.org

Community College of Baltimore County (CCBC) CASE Program

CCBC’s CASE Program offers coursework for people of all reading and math levels, as well as vocational programs for students with disabilities who want to learn skills for the workplace.
(443) 840-3262, ccbcmd.edu

Disability Rights Maryland

This nonprofit provides legal assistance to Marylanders with disabilities, free of charge. According to their mission statement, “DRM envisions a world where people with disabilities are fully included in the workplace, neighborhoods, and all aspects of community life.”
(410) 727-6352, disabilityrightsmd.org

Easter Seals

Easter Seals Adult Day Services has two missions: offering individualized care for people with disabilities and giving respite for those who provide care. The facility hosts a variety of activities and services and their staff encourages self-expression, aiming to include specific interests in day-to-day programming.
(410) 277-0940, easterseals.com

First Maryland Disability Trust

Comprised of disability and elder-law attorneys, this organization aims to help people with disabilities maintain access to benefits, both public and private, in order to make sure the individual’s needs are properly and consistently met.
(410) 296-4408, firstmdtrust.org

Kennedy Krieger Institute

Internationally recognized for improving the lives of those with neurological, rehabilitative, or developmental needs, Kennedy Krieger offers many programs for adults, including adaptive sports and employment services.
(443) 923-9400, kennedykrieger.org.

The League for People with Disabilities

Currently, this organization offers 12 programs and services to assist people with disabilities in their daily lives. There’s a medical day program specifically aimed at serving adults, as well as resources like vocational services and recreational opportunities for people of all developmental, cognitive, and physical levels.
(410) 323-0500, leagueforpeople.org

L.I.F.E. Inc.

L.I.F.E. stands for Living in a Free Environment, and their mission is helping people with disabilities do just that. Their adult medical day program provides access to medical care, activities, meals, and more. Transportation is available for participants within a certain radius. L.I.F.E. also offers a community living program with care options that correspond to each person’s needs, from around-the-clock support to more independent living.
(410) 735-5433, lifeinc.org

Maryland Developmental Disabilities Administration

The MDDA works to provide those with developmental disabilities with necessary services, with the goal of helping recipients enhance their lives and get involved in their communities. Applicants’ needs are met based on eligibility, and those whose requirements cannot be met immediately are currently being placed on a waiting list.
(410) 572-5920, health.maryland.gov

Maryland Department of Disabilities

MDOD is focused on offering employment resources like housing, education, transportation, and disability benefits. Employers looking to hire people with disabilities can also turn here to learn more about disability law and accommodations, as well as how people with disabilities can positively impact the workplace.
(410) 767-3660, mdod.maryland.gov

Maryland DORS Program

Aimed at helping people with disabilities find jobs and stay employed, DORS is a federally funded, eligibility-based program that provides resources to help individuals reach that goal. “It’s statistically shown that most people have better physical and mental health when they’re gainfully employed,” says Kimberlee Schultz, Director of Public Affairs for DORS.
(410) 554-9442, dors.maryland,gov

Pathfinders for Autism

Here, people with autism will find access to resources, information, activities, and more that they can utilize throughout their lifetime. For adults specifically, Pathfinders offers their own resources, as well as information about other valuable options like medical care, support groups, and employment, with the goal of helping people with autism live the fullest lives possible.
(443) 330-5341, pathfindersforautism.org

St. Peter’s Adult Learning Center

St. Peter’s offers numerous programs that aim to help adults with disabilities become active members of society. Their day program offers volunteer opportunities, job readiness activities like résumé writing and computer skills training, visits to local parks and museums, and much more. There are also many resources for members who might be seeking employment.
(410) 685-7340, stpetersalc.org