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Cost of Living

“Since Medicaid is government money, I don’t mind justifying it,” says Mary Jo Hamlin about coverage for equipment for her daughter, Sarah. “But I can see how parents who are just starting the process could be overwhelmed.”

Michael Davis Photos

Local nonprofit Charity for Children has helped (pictured) Abneri Torres, Daniel Guerra, and their son, 3-year-old Luis, who was born with Hirschsprung’s disease, a condition that causes the blockage of the large intestine due to improper muscle movement in the bowel. Luis has undergone 13 surgeries for the condition and Charity for Children has helped pay for associated expenses. “While they do have Medicaid, there are still many things that Medicaid does not pay for or reimburse for,” says Nina Albino, director of Charity for Children.

Parents of a child with a disability have many concerns to juggle, and one of the most worrisome is tracking down money to pay for specialists, equipment, home renovations and other expenses.

Assistance for disabled children and families is provided through county and state agencies with an alphabet soup of acronyms. Each aspect of care for a disabled child requires paperwork for, most often, Medicaid or private health insurance. If a request is denied, parents have to get even more resourceful and persistent. Knowledgeable case workers or other professionals are often the guides for families seeking equipment or services for their children.

Anna Pavia is a social worker for Madison County. She has helped many families navigate the various state and county programs that assist families of children with special needs. But when her own son, who is almost 2, was diagnosed with microcephaly—a neurodevelopmental disorder that causes an abnormally small head—three months after his birth, she quickly learned how much effort it takes to find out about, and get, the financial help the family is entitled to.

“If I wasn’t working in the field, I wouldn’t have known what to do,” says Pavia.

Today, Anthony Pavia receives care from 11 different specialists, and he will require specialized equipment and home modifications for the rest of his life. In addition to the life-threatening brain abnormalities caused by his mycrocephaly, Anthony has had to contend with several other complications. His vision, breathing and ability to feed have all been challenged, and even exposure to simple viral infections can put Anthony in the hospital.

The family has home nursing care for Anthony during the day. The family’s health care costs are immense. But the Pavias consider themselves lucky to have good insurance and to have known to get Anthony on the Medicaid waiver program—which helps with coverage for children with disabilities—as soon as they could.

The family works with a case coordinator through New York state’s Early Intervention Program—commonly known as EIP—which helps coordinate services for children under 3 years of age with a confirmed disability or established physical, cognitive, communication, social-emotional or adaptive delay. The family has another case coordinator through the county’s Developmental Disabilities Services Offices, who helps them with claims through the county’s Care at Home Waiver Program. “We have a pretty good team right now,” Pavia says.

While Medicaid typically covers medical costs for children with disabilities, families must apply for Medicaid waivers to cover expenses such as environmental accessibility adaptations, in-home care providers and therapists, and specialized medical equipment. The guidelines for what is covered are determined at the state level, and each state plan is approved at the federal level. This is because state and federal funds are used to support the waivers. There are often annual or lifetime caps on these expenses.

Once eligibility for a Medicaid waiver is determined, families are matched with support or service coordinators, and an individualized service plan is developed.

But even the Pavias have encountered roadblocks. Coverage for a bath seat they needed to ensure Anthony’s safety was rejected by their insurance company. “We’ve been fighting for a wheelchair stroller,” Pavia says. The family went back and forth with Medicaid for over a year.

These particular strollers are costly—often running several thousand dollars. Pavia was frustrated she had to justify Anthony’s need for a piece of equipment that was clearly necessary. Once Anthony reached 30 pounds, Pavia could no longer carry him easily to his numerous appointments.

After going back and forth with Medicaid, Pavia wrote a letter to her state senator. As a result, Medicaid agreed to pay for 20 percent of the cost of the chair, with insurance picking up the rest. But the struggle has unnerved Pavia. She foresees another fight coming: She wants Anthony to have a stander—a device that would enable him to be upright and improve his muscle tone and circula- tion—at home. She wonders how families who don’t have the time or means to fight manage without the equipment their children need.

“The whole thing with justifying what your child needs is so tough,” she says. “I mean, for kids with chronic disabilities, they need these things to improve their quality of life. This is their reality for the rest of their lives.”

At one point, when it seemed that the Pavias would not be able to get Anthony the wheelchair stroller, they explored alternative forms of funding. Blue Cross Blue Shield/Excellus has a program called Compassion Net, which puts clients in touch with these sources.

Through Compassion Net, Pavia connected with Charity for Children, Inc., a local non-profit organization that offers financial and educational support to families of children with chronic conditions.

Director Nina Albino offered to help pay for the chair if Medicaid would not.

Albino has heard many such stories since she began Charity for Children in 2004.

“When people apply for Medicaid, they may not be told what’s available to them,” she says. “Even I have trouble keeping it all straight. I think the process of getting services needs to be streamlined. There are doctors, social workers and case managers that do help families find some of these resources, and of course Medicaid wants to avoid overlapping of services, but it shouldn’t be this complicated. As it is, some of these families are falling through the cracks.”

By the time a family connects with Albino, they often don’t have time to wait for Medicaid to agree to reimburse them for a piece of equipment or necessary service. Her organization has helped families with everything from big-ticket

purchases like wheelchairs or beds, to gas cards for trips to see specialists.

“Sure, Medicaid might reimburse some of those costs, but these families often don’t have money up front to pay for a trip to Boston to see a doctor,” Albino says. “They can come to me this morning, and I don’t have to wait (to approve a request).”

Small, new organizations like CFC have limited resources. But Albino has helped more than 100 local families with short- and long-term needs. Charity for Children has funded its work primarily through donations received in connection with events it holds each year. “We have never said no to anyone, and I don’t want to start now.”

Mary Jo Hamlin, a Clay mother, says the key to success is getting good service coordination. Hamlin’s 15-year-old daughter, Sarah, was born with spastic quadriplegia cerebral palsy, a neurological disorder that affects movement and muscle coordination in all four limbs. The family, who adopted Sarah when she was 3, has managed the costs of everything from bathroom modification, so that Sarah can be more independent, to a specialized wheelchair better suited to the needs of an active, growing teenager.

Like the Pavias, the Hamlins have good insurance. “But the amount they would pay for equipment was so low,” Hamlin says. “I don’t even understand some of the requirements under the Medicaid waiver program.”

Sarah’s first wheelchair, purchased before she started kindergarten, was covered through Medicaid, as was a walker she used at school. Sarah’s physical therapist would write a letter of justification, and in those cases, the equipment would be covered. Soon, Sarah will be trying two sets of crutches with her physical therapist; one pair Medicaid will cover, the other not.

“I am asking her physical therapist to choose which ones will work best for Sarah, as that is the more important issue,” Hamlin says. “She wants to graduate from using the walker to using crutches someday.”

Hamlin says a good letter of justification from a physical therapist can make a difference in Medicaid coverage. The motorized chair Sarah now uses was cleared for coverage in just over a month.

When the family modified their bathroom so Sarah could maneuver better, the costs were covered through a Medicaid waiver submitted through Onondaga County’s Disabilities Service Office. Arise helped coordinate those expenses.

Hamlin has learned a lot by attending the workshops offered through Arise and Enable—local agencies that support the disabled and help families manage some of the red tape.

“Since Medicaid is government money, I don’t mind justifying it,” she says. “But I can see how parents who are just starting the process could be overwhelmed.”

As children grow, their equipment needs evolve. Some families find items their children need through the state-coordinated TRAID-IN Program. This online service (www.cqcapd.state.ny.us) is a listing of used equipment and assistive living devices available for sale. Enable also has a lending program, Project Adapt, through which clients can borrow assistive living equipment before deciding on a purchase. Enable’s library currently includes everything from augmentative communication devices to adaptive toys and games.

Some programs are geared toward children with specific disabilities, such as a hearing impairment. Miracle-Ear, a national chain of hearing aid providers, has a foundation that offers free or low-cost hearing aids to children 16 and under whose families meets certain income guidelines and who do not qualify for financial support from a government agency.

The ins and outs of Medicaid-waiver process can be baffling to the uninitiated. For instance, Medicaid can cover expenses such as travel or food when a child needs to go out of town for treatment, but parents have to know how to submit requests for those kinds of expenses, says Denise Buerkle, a case manager with the Medicaid-waiver Care at Home program at the Elmcrest Children’s Center in Syracuse.

“Medicaid doesn’t approve everything, and a lot of times families just don’t know what they can get through the waiver program,” Buerkle says. “Kids on Medicaid without a waiver may not get a case manager, and it’s not up to the Medicaid worker to be a case manager. The system is overwhelmed.”

Buerkle and Albino are working together to try and develop a workshop on the various funding sources available to families of children with disabilities. For families who are dealing with a new diagnosis, Buerkle recommends that they contact the county Office for Persons with Developmental Disabilities first.

“The doctors don’t always know where to direct families,” she says. “The Early Intervention Program (for children under 3) is usually pretty good about referring people to the support services they need. But a lot of it is word of mouth. We are lucky in Onondaga County, in that many of the service providers know each other and there are a lot of referrals.”

Another case manager says many of the referrals her office gets come right from the hospitals. Linda Peressini works for Onondaga County’s Physically Handicapped Children Program. Parents who are not connected with the county’s resources following an initial diagnosis can usually connect with the information they need through the county’s comprehensive website, www.ongov.net/health/PHCP.html.

With all the budget constraints at the county, state and federal level, it is more important than ever for families to work with a service coordinator if they are eligible, says Karen Adams, an advocacy supervisor and Medicaid service coordinator for Exceptional Family Resources, a local agency that supports people with disabilities and their families. “These individuals know how to work on behalf of the families. It is very unusual for a family to go out on their own and get everything they need.”

“Years ago, we could fund almost everything (for people with disabilities),” Adams adds. “But now it absolutely has to be directly related to the child or the family’s quality of life.”

Adams, who has a 12-year-old son with autism, says many of the referrals to Exceptional Family Resources are made through doctors or public schools. The agency fields more than 2,000 calls a year, and publishes a comprehensive resource manual (available at www.contactefr.org/servicedir.html). “That manual is a great tool. It does more for information and referral than any one person could do.”

Despite the challenges some people have in understanding the Medicaid waiver program or any other services available to help families with disabled children, Adams believes more people have access to information and support now than ever. Exceptional Family Resources offers an annual workshop on the services covered through the Medicaid waiver program.

“The Internet alone has really improved information management and distribution,” Adams says. “The community as a whole has also gotten more savvy. There are a lot more opportunities for families to join support groups, or get involved with fund-raising events, and those are opportunities for them to talk with other families and share ideas.”

That is exactly what Anna Pavia has chosen to do. She is trying to raise money and awareness about her son’s condition by planning an annual walk or run for microcephaly. Her family’s experience has also changed how she approaches her work.

“It saddens me to know all of this—all these struggles parents have to go through to maintain a quality of life for their children,” she says. “It breaks my heart. I’ve always had compassion for my clients, but now, seeing other parents with sick children, I relate to them much differently. No one could possibly understand unless they had gone through this themselves.”                                   ■

Award-winning writer Tammy DiDomenico lives in DeWitt with her husband and two sons.

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