With more and more children being diagnosed with special needs, millions of American families are facing the daunting task of paying for a large variety of necessary, and at times, uncovered services for their children. Not only are these families struggling with the emotional trauma of their child’s diagnosis, but they are plunging into a world of red tape and financial strain that is unfathomable to most parents already dealing with the average day-to-day challenges of raising a family.
Families of special needs children are inundated with an array of expenses that vary based on the diagnosis of the child. These expenses include things such as co-payments, coinsurance, medications, medical supplies, non-covered medical services, specific dietary requirements, special aides such as adaptive clothing, assistive technology and walking supports, counseling services, education, diagnosis-specific recreation activities, transportation costs to and from appointments and more. Many families find themselves taking unpaid time from work for frequent doctor’s appointments, medical procedures and therapeutic services. They may be traveling great distances to various medical facilities, up to several times per week or for lengthy periods of time, to seek treatment for their children.
While there are many programs and resources for the families of special needs children, many of them are based on income qualifications. What happens to the families who exceed the income qualifications and are expected to pay for these expenses out of pocket? Many of these families are drowning under piles of bills. Some are even claiming bankruptcy or losing their retirement and other investments in order to afford the high costs associated with having special needs children.
Below is a compilation of local and national resources and agencies, broken into specialty categories, which offer services for special needs children of various family incomes.
MEDICAL SERVICES
The Pennsylvania Department of Public Welfare has become the home base for a plethora of programs, agencies and coverage that target a wide variety of diagnoses for families of special needs children. Trained specialists will be able to guide each caller to the appropriate services and programs based on a case-by-case scenario. www.dpw.state.pa.us 1-800-692-7462
Supplementary Support Income provides supplemental income for disabled children based on set criteria. www.ssa.gov 1-888-327-1176
CHIP, Children's Health Insurance Program, provides insurance to all uninsured children regardless of family income. www.chipcoverspakids.com 1-800-986-KIDS
The Arc of Pennsylvania is an advocacy group representing children and adults with cognitive, intellectual and developmental disabilities. The Arc provides an invaluable tool called the Resource Directory and Guide to Essential Services for families with special needs. It is free to download. www.thearcpa.org/resources.htm
County Chapters of the Arc of Pennsylvania provide services and referrals as well. They are:
The Arc of York County, www.thearcofyorkcounty.org, 717-846-6589
The Arc of Cumberland/Perry Counties, www.cparc.org, 717-249-2611
The Arc of Dauphin/Lebanon Counties, www.arcofdc.org, 717-920-2727
The Arc of Lancaster County, www.thearcoflancasterco.org, 717-349-5251
Ronald McDonald House Charities provide many useful services such as housing, meals, playrooms, internet access, showering facilities, laundry facilities and much more throughout hospital systems for families that have children who require extended hospital stays. www.rmhc.org 717-533-4001 (Central Pennsylvania Chapter)
The Special Kids Network is a referral service with access to over 15,000 local resources based on your individual needs. A referral specialist will take your information and provide you with community opportunities for a broad spectrum of services such as health care products, support and advocacy, therapy, recreation, and more. www.helpinpa.state.pa.us 1-800-986-4550.
DEVELOPMENTAL SERVICES
Mental Health/Mental Retardation Program (MHMR) provides services for children with developmental disabilities. www.mhmrpa.org 717-232-7554
MHMR also offers Early Intervention programs for ages 0-3 throughout the counties. They are:
Cumberland County of PA Early Intervention, www.ccpa.net, 1-888-697-0371 x 6320
CMU of Dauphin County, www.cmu.cc/main.asp, 717-232-8761
Family-Child Resources, Inc. of York County, www.f-cr.com, 717-757-1227
Lancaster County Early Intervention, www.co.lancaster.pa.us, 717-399-7323
For ages 3-21, local Intermediate Units (I.U.) offer a range of services for special needs children. The surrounding Intermediate Units are as follows:
Intermediate Unit #13 of Lancaster/Lebanon, www.iu13.k12.pa.us, 717-606-1600
Lincoln Intermediate Unit #12 of York/Adams/Franklin, www.iu12.org, 717-624-4616
Capital Area Intermediate Unit #15, ww.caiu.org, 717-732-8400
PRESCRIPTION SERVICES
Free Medicine provides prescription medication for the underinsured and uninsured. www.free.medicine.com 573-996-3333
Partnership for Prescription Assistance helps patients find a prescription drug coverage program that fits their needs for little or no cost depending upon eligibility criteria. www.pparx.org
RXAssist provides a directory of pharmaceutical providers that offer free medications for people who are unable to afford them. www.rxassist.org
NeedyMeds offers discounted prescription drug costs through a discount card presented at a local pharmacy at the time of purchase. www.needymeds.com
Families of special needs children should attempt to develop close relationships with local and county level programs and advocacy groups. These organizations maintain large amounts of useful information for special needs families regarding services and funding. In addition to formal organizations, some of the best resources for special needs families are those families who are experiencing similar situations and have become strong voices and advocates within the community.
Alicia K. Shaffer is a freelance writer and mom of a preschooler.
To read this story and others featured in our Summer 2009 edition of Capabilties, visit Central Penn Parent at www.centralpennparent.com and click on the Capabilities link.