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How do parents navigate care for their children with disabilities and other needs? What is the support available, and how do US and other systems compare?
First, when talking about "disabilities" we run into immediate issues with definition. Are we talking about physical impairments or problems that are long term or permanent? What about those autistic spectrum children who may be abnormally "gifted" in some areas and need special teaching help? This is why the term "special needs" is usually preferred.
Even under this umbrella, there is a bewildering range of conditions to be addressed. On the physical front, special needs children may have anything from food allergies to terminal illnesses.
In developmental terms, the range can extend from delays that need catch up help to those that will stay irreversibly entrenched, and with causes that extend from mild learning disabilities to profound cognitive impairment.
Emotionally, too, special needs can range all the way from occasional panic attacks to severe psychiatric problems.
Still, the designation is useful for setting achievable goals, achieving understanding within families and for obtaining desperately needed help.
There is a further fundamental problem that affects almost every family with a special needs child. Obtaining professional support depends on a diagnosis, the 'statement' that quantifies the problem.
However, this statement of diagnosis may become a counterproductive "label."
One danger is that from here on, the child is treated as "suffering from..." rather than being seen as a whole person with the wide range of ordinary human needs.
The other danger, particularly acute in dealing with complex psychotic conditions, is that an original diagnosis will severely limit later therapies.
The importance of seeing past labels and treating the child as a "whole person" is one of "home truths" defined for parents by the US education department-funded National Dissemination Center for Children with Disabilities (NICHCY).
The NICHCY says:
"Having a disability is part of the mix, but so are your child's strengths, humor, talents, and interests."
"Don't let the labels get you down. Use the label when it's convenient or helpful, like when you're looking for information on your child's disability. Forget the label the rest of the time. Your child's the same person, either way. He or she hasn't changed one bit - label or no label."
NICNHY started out as the National Information Center for Handicapped Children and Youth. It operates as America's "clearing house" for information and knowledge resources on disabilities and special education for youngsters of all ages up to 21 years.
NICHCY responds to thousands of requests for information each year from families, professionals, advocates, and others concerned with issues affecting children and youth with disabilities. It says many of those people are concerned that the children they care for will be stigmatized.
Here, NICHCY quotes the US Congress:
"There are many home truths about disability, but perhaps the most visible one is that disability is a natural part of the human experience..."
This forms the preamble to the 1975 Disabilities Education Act that forms the foundation of America's special education laws. Now recast as the Individuals with Disabilities Education Act (IDEA), it has become established as the core guarantor of state and federal aid for special needs children.
Combined with the 2001 No Child Left Behind Act, the federal aid program for disadvantaged students, IDEA should ensure that all special needs children, regardless of parents' means, receive an education that sets high standards and measurable goals.
The National Dissemination Center also meets with many parents who worry that their children's disabilities mean they cannot be educated in normal schools or must be confined to separate classrooms.
"Not true," NICHCY declares. "As you learn more about the special education system and how it works, you'll find that IDEA actually prefers students being educated together in the regular classroom."
In the UK, educational support for special educational needs (SEN) children is supposed to be more woven into mainstream health and education provision.
However, integration of care is not aided by the historic schism that has always existed in nursing between "children's nursing" and "learning disabilities nursing," nor in the fragmentation of responsibilities for supporting special needs between the health, education and social services agencies.
Accordingly the UK government has been compelled to reform a system acknowledged as "not fit for purpose." As Sarah Teather, the UK's former minister for children, said in May 2012:
"The current system is outdated. Often it is not clear to parents, [nor] to local services, who is responsible for delivering on the statement of special needs."
"Thousands of families have had to battle for months, even years, with different agencies to get the specialist care their children need. It is unacceptable they are forced to go from pillar to post, facing agonizing delays and bureaucracy to get support, therapy and equipment."
Teather had just announced that from 2014 the UK's Children and Families Bill (now making its way through the House of Lords) would give parents new rights to buy-in specialist educational needs (SEN) services and disabled care for children.
It will also legally require health, education and care services to work together to plan and commission services for disabled children and young people. A single unified assessment would give parents qualification for a personal budget for support, giving them, for the first time, some control over spending, rather than rely on their local authorities as sole provider.
Other reforms aim to streamline state services, something welcomed by Christine Lenehan, director of the Council for Disabled Children, the UK government's strategic partner on the SEN reforms. She says the reforms will tackle "the battleground for families by ensuring joined-up local services and clear local information."
The thrust of legislation on both sides of the Atlantic might seem like unstoppable momentum towards universal access to the support and resources for children with special needs.
However, there is another uncomfortable reality, that sometimes the irresistible force of moral and social justification encounters the immovable object of lack of resources.
This clash of hope against resources often happens in the cash-strapped National Health Service authorities, as MNT has reported in the cases of 5-year-old Daniel Pretty - see Pioneering cerebral palsy surgery: Daniel's journey - and 8-year-old Joseph Hill.
Both these young boys have forms of cerebral palsy for which expensive Selective Dorsal Rhizotomy (SDR) spinal surgery could enable them to stand and walk unaided.
In both cases, their parents are struggling to raise the more than £50,000 ($77,000) needed to pay for SDR in the US.
In Joseph's case, the operation had been scheduled at Leeds General Infirmary, near their home in Wakefield, West Yorks, until local funding decisions were taken over by a national body. The national NHS commissioning body takes guidance from the National Institute of Health and Clinical Excellence (NICE), whose latest review concluded:
"Current evidence on SDR for spasticity in cerebral palsy shows that there is a risk of serious but well-recognized complications. The evidence on efficacy is adequate. Therefore this procedure may be used provided that normal arrangements are in place for clinical governance and audit."
Faced with official refusal, parents like Angela Hill and Catherine Pretty need to seek help from Charities such as SCOPE or Tree of Hope, which is supporting fundraising appeals in both Daniel and Joseph's cases.
Jeremy Marris, Tree of Hope's chief executive, is sympathetic to the intense pressures parents face in getting the help they believe their children need. He says:
"It's always the parents who encounter the frustrations and who are on the front line in these battles."
The charity's mission is to help parents overcome funding crises like those facing Daniel and Joseph by helping to raise money independently. It's becoming increasingly successful in this, with the number of children helped rising from around 15 in 2010 to almost 100 last year.
The charity also sees itself as having a valuable role to play, like NICHCY, as an informational resource centre, putting parents in touch with specialist providers of services and equipment.
In this, they are not alone. There are now more than 180,000 registered charities in England and Wales, with hundreds more being created every year.
The overall number though, has barely declined from 2000, when Gordon McVie, director general of Cancer Research Campaign, openly warned that the public was becoming confused and that this could erode trust and support.
Of course, any confusion in the UK would be dwarfed by that in the US, where in 2009 there were 1.4 million charities - one for every 225 people.
The Charity Commission's chief executive, Sam Younger, has professed to being "surprised" by the lack of inter-charity collaboration, but added: "A lot of charities are set up by those passionate about the way they do things."
For parents looking for help, the multiplicity of charitable support does at least mean there is always someone else to engage. For these parents, the basic priorities are always the same.
One American mother, Patricia McGill Smith, has written powerfully about the feelings of loneliness and powerlessness that can afflict parents - and the value of reaching out to others.
"There was a parent who helped me. Twenty-two hours after my own child's diagnosis, he made a statement that I have never forgotten:
'You may not realize it today, but there may come a time in your life when you will find that having a daughter with a disability is a blessing.'
I can remember being puzzled by these words, which were nonetheless an invaluable gift that lit the first light of hope for me..."
Patricia, in her You are not alone article recommends parent-to-parent peer programs as an invaluable first port of call, along with NICHCY.
As Terri Mauro, mother of two SEN youngsters and campaigner for special needs provision in the US, puts it:
"There are some common concerns that link parents of challenged kids, including:
- Getting appropriate care and accommodations
- Promoting acceptance in the extended family, school and community
- Planning for an uncertain future and
- Adjusting routines and expectations.
Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be."
Written by: Nick Valentine
Copyright: Medical News Today
Not to be reproduced without the permission of Medical News Today.
New to Disability?, US National Dissemination Center for Children with Disabilities, March 2011.
Pioneering cerebral palsy surgery: Daniel's journey, Marie Ellis, Medical News Today, 6 August 2013.
Visit our Pediatrics / Children's Health category page for the latest news on this subject.
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