Caregiving: Advocating for a child

Before we adopted our daughter, we had to attend a set of parenting classes.  The class covering special needs children focused on being an advocate for your child.  I thought, "Great!  I have a big mouth and I like to argue if I think I am right.  I finally found something in life that can benefit from these somewhat negative traits."  Once we knew our daughter's condition, we contacted other parents with hearing disabled children, toured two local schools for the deaf, and lined up doctor appointments with specialists that these sources had recommended.

The adoption was finalized and the process to register our daughter with early intervention was smooth.  She was accepted and put into a remarkable program called Sound Start at Lake Drive Program.  Over the next year we switched audiologists and ear nose & throat specialists to find personalitites in professionals that met our expectations and values.  Our daughter attended sessions at her school, and after she started talking more, had speech therapy at home.  She progressed well and advanced mentally and physically beyond her biological age.  There was little advocating needed.

Then came preparations for turning 3 years old.  In New Jersey there is a clear delineation between our early intervention services and preschool services.  Each child needs to be re-evaluated prior to turning 3 and meetings are held with the local school system to determine what, or if, any services will be provided.  We were given a procedure manual, which was also explained by our early intervention case worker.  We had heard stories from other parents about their experiences.  The common thread was that it was not a simple, stress-free experience, and, most likely, it would entail a lot of advocating.  At the same time, our daughter was starting the evaluations for transition, her doctor recommended a hearing device based on her recent reactions to sound.  These two events have led me to really understand what it means to advocate for a child.  We have had help from some remarkable people most of whom we have met during this process.  All were very willing to support our daughter's cause.  So here are our recommendations when advocating for your child:

• Network with other parents in a similar situation.  We have benefited from hearing other parents' stories, and have, hopefully, been able to share some value with parents following us in the process.  It is sad, but at the same time re-assuring, to realize that other families are facing similar situations.  For example, we learned that it is common for hearing test results to vary from visit to visit and it is common to change doctors if you feel uncomfortable with a practitioner and his or her recommendations. 
• Call specialists and ask if they can support you in any way.  Not only did our daughter's school help us, but the other school for the deaf in the area did as well.  Even though we had no connection with the Summit Speech School, the executive director assisted us by suggesting a new type of hearing evaluation and, after a review of our daughter's case, provided suggestions on the type of services that were needed.  Further, when we had issues obtaining my daughter's hearing device, I phoned clinics around the state asking them if they dealt with the device.  Every time, even if the staff could not help me directly, they gave me suggestions and phone numbers of further places to call.
• Do your research.  Our daughter's school pointed us to some scholarly research for children with hearing loss.  By adding our own research we were better able to articulate the long term effects of our daughter's condition and identify methods for aiding her.  Further, we now know the developmental areas where she is at risk, and can monitor those areas more closely.  
• Persistence pays off.  First, we were persistent with the local school system in separating a disabling condition from developmental delays.  While there may not be a need for some special needs children to have special services if they are not developmentally delayed, a hearing loss is a situation where it is necessary to have special services if a child is going to succeed in an integrated classroom.  Throughout the evaluation process, we learned more questions to ask and built up our case to a point where the school system agreed to classify our daughter for services.  Second, we were persistent regarding complications in obtaining the hearing device.  The rehab center we were sent to was unresponsive, could not schedule appointments less than a month in advance, and had an inappropriate number of audiologists (1 instead of 2, for a 3 year old patient) attend the appointment, which caused the process to be drawn out further.  I phoned the ear nose and throat specialist and asked if we could go somewhere else.  I was given the director's name for the program at the rehab center.  When the director was no better than the other staff, I phoned the doctor again and asked to go elsewhere.  He really listened.  He phoned me at home after-hours and listened to all of my concerns.  He then took over the case himself, opening an account with the manufacturer.  His audiologist also kept the process moving for us when the manufacturer had issues delivering the hearing device on time. 
• People care (even if their job requires that they say no to you).  Every person throughout the process supplied us leads and assistance.  It was remarkable.  First, with regard to funding, the device is pretty costly, even more so than a normal hearing aid.  The school system who was declining services gave us names to call; the early intervention people put together a request to the state for us; the doctor wrote to our insurance company;  the manufacturer of the device offered advice.  We talked to people in state government roles, and family members gave us ideas. In the end, we did not get financial aid, but I am truly overwhelmed by the number of people who offered advice and wrote letters on our behalf.  Second, people helped us lobby for services.  The rehab center that was having issues getting us the hearing device, offered to write a letter to the school system.  Our daughter's school and the other school for the deaf wrote recommendations for us to submit.   We are awed by the willingness to help others that was shown to us and hope that we can do the same for other families when they need it. 

Overall, we have had it easy in the care-giving arena.  We have had about 7 months of chaos in a little over 2 year period.  Our daughter is healthy and advanced in her development.  But the adoption agency was right, advocating is the major responsibility in a case like ours.  We hope that our experience will aid others when they face a situation with their child's health or development.


To better understand the issues of educating a child with special needs, start with browsing the National Dissemination Center for Children with Disabilities.  Their website offers information on disabilities, education of special needs child, state specific programs and offices, and much more.

Family Caregiving

More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.

4% of family caregivers care for a special needs child with an estimated 16.8 million caring for special needs children under 18 years old. 55% of these caregivers are caring for their own children.

73% of family caregivers who care for someone over the age of 18 either work or have worked while providing care; 66% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely; and 1 in 5 family caregivers have had to take a leave of absence.

47% of working caregivers indicate an increase in caregiving expenses has caused them to use up ALL or MOST of their savings.

20% of employed female caregivers over 50 years old report symptoms of depression compared to 8% of their non-caregiving peers.

22% of family caregivers say they need help communicating with physicians.

(Caregiver statistics are quoted from NFCA)

The role of caregiver can be a short-term or long-term assignment.  For some it can start as financial or chore assistance for an elderly relative and build to a more serious full-time proposition as that relative’s physical or mental health deteriorates.  For others it is sudden and full-on 24X7 care in order to prevent an elderly relative from going to a rehabilitation facility or elderly care facility.  Still others find themselves caring for special needs children.   Relatives also manage the care as provided by a facility when the patient can no longer be serviced in the home.

Help is available, but sometimes, it is difficult to find the time to locate it.  Plus the caregiver may not understand where to go for assistance. The National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (NAC) are organizations that can help.  They have worked together to create the site Family Caregiving 101.  This website offers many topics, such as how to talk to the hospital and insurance companies.  It provides links to financial resources and information about medical conditions.  There is also a link to a training manual for caregivers.

The NFCA supports caregivers regardless of diagnosis or life stage in order to empower, educate and support caregivers.  They also advocate for the population of caregivers and offer online discussions for caregivers.

The NAC also offers online resources and publications.  This not-for-profit alliance has members from professional associations, service, grassroots and disease-specific organizations, corporations and government agencies.  Their mission “is to be the objective national resource on family caregiving”.

For the next couple of posts, we will continue to focus on the issues of caregiving.

The Good Hedgehog: Adapted from a fable by Aesop

A fox was swept away by the force of the river whilst trying to cross; he was carried over a waterfall, and washed up on the rocks near a deep ravine. He lay, bruised, sick and unable to move. Soon a swarm of blood-sucking flies settled on him. A hedgehog, who was passing by, saw the motionless fox and, filled with compassion for the fox’s suffering, asked if he should disperse the cloud of flies that were tormenting the fox. ‘No, please don’t disturb them,’ said the fox. ‘I don’t understand,’ said the hedgehog. ‘Don’t you want to be rid of them?’ ‘No,’ said the fox. ‘These flies are full of blood and don’t bite much, but if you shoo them away, others, hungry ones, will surely come in their place, and they will drink all of the blood I have left.’

This insightful fable by Aesop, writing in Greece in the 6th Century B.C.E., predates the Christian Greek Scriptures (the New Testament) and the story of the Good Samaritan by hundreds of years, and is roughly contemporary with the works of the Buddha, writing in China. The story remains relevant and fresh today, especially for its novel viewpoint, and surprise ending. While it was originally part of a longer story (which I won’t explore further here) that has Aesop himself, an ersatz lawyer, defending a crooked politician, the story is also about different perceptions of rescue, and rescuing, and provides us eye-opening insight into both the viewpoint of one who is suffering, and of one who wishes to give aid, and who can’t imagine, in this scene, that more harm can come from ‘help’. The story allows us to see that all aid is not necessarily aid, no matter the intent. It is also a reminder that suffering, to a degree, can be preferable to something more hideous and unbearable, and that a potential rescuer needs to consider whether help is really required, and to what extent, so that matters aren’t made worse, and injuries exacerbated.  It also demands of us an increased sensitivity to all others, and a new level of meaning for the term ‘judgment’.

Evaluating charitable organizations

While researching how one might evaluate a charity, I came across two helpful websites, both of which have been cited in national media as authorities in this area.

First, the American Institute of Philanthropy (AIP) website offers a wealth of information for understanding better how a charity operates.  Ratings are provided for charities to allow individuals to determine whether or not they want to support a particular organization.  AIP indicates that top rated organizations:

generally spend 75% or more of their budgets on programs, spend $25 or less to raise $100 in public support, do not hold excessive assets in reserve, and receive "open-book" status for disclosure of basic financial information and documents to AIP.

Details of their criteria are available on their site.

This not for profit organization also offers articles that offer insight into governance, accountability, solicitations and other topics.  Here are some of their tips for giving wisely: 

• Find out where your dollars go
• Remember:  “Tax Exempt” does not always mean “tax deductible”
• Do not be misled by a charity’s familiar name
• Ask if the charity is registered by federal, state and/or local authorities

Similarly, Charity Navigator rates organizations.  This website indicates that they are independent and a non-profit organization themselves.  Their ratings tables seem more complicated.  At first I thought they were less stringent than the AIP because their scoring allow for program expenses of up to 30% to receive points.  However, they have detailed criteria per type of charity and include primary revenue growth, and program expense growth, which AIP does not.  They also calculate working capital ratio just as AIP does, which measures the ability to operate into the future without any further income.

Charity Navigator also offers tips for choosing a charity to support:

• Review executive compensation
• Check the charity’s commitment to donor’s rights
• Concentrate your giving

Charity Navigator offers studies, such as the metro market study of charitable causes, a CEO compensation study, and a special events study.  I would characterize their offerings as industry analytics and their role as providing an overview of industry trends, where I would characterize AIP’s offerings as “whistle-blower” activity in focusing on news alerting readers about poor practices by individual organizations and across the industry.

I did like the fact that Charity Navigator offers a search box to quickly find information about a charity, where on the AIP site you will need to search the Top Rated and A-Z menus options to find information on individual organizations.  Further, AIP releases many of its ratings in its print report only, which needs to be purchased. 

As an interesting experiment, I compared the same charity at both websites.  Here are the results:

• Reading Is Fundamental (RIF)  received a grade A from AIP, and 2 stars from Charity Navigator.  No details are provided on the AIP website other than the grade.  Charity Navigator provided all of the details for the current and historical ratings for free.
• National Trust for Historic Preservation was rated 2 stars on Charity Navigator and B+ on AIP.

I recommend both sites for your research.  Use the compiled information from both to make decisions on the causes you want to support.

Addendum 8/16--

As a courtesy, I notified both organizations about our article.  I am adding a quote from AIP here as it will help to further delineate each of these organizations' work:

What sets AIP apart from other sources of charity information is our thorough and rigorous analysis of every group that we rate. Other rating organizations do not use the same standards when evaluating charities. . . At AIP, our analysts perform a thorough and in-depth evaluation of a charity’s IRS form 990, including schedules and attachments, audited financial statements, and annual reports in order to determine how a given charity is actually raising and spending your donated dollars.  Our function is not to please the charities, but rather to provide the donating public with the information they need to make better informed giving decisions. . . Our criteria is generally thought to be the strictest in the sector.