HIV/AIDS and Disability

Around a quarter of people with HIV are unaware of their infection and at risk of passing on the virus to others through unprotected sex, according to public health officials. The growing relationship between HIV/AIDS and disability is an emerging issue and cause for concern as persons with disabilities are at higher risk of exposure to HIV.

Additionally, there is a growing understanding that persons living with HIV or AIDS are also at risk of becoming disabled on a permanent or episodic basis as a result of their condition.

Like any other person, persons with disabilities require information on HIV/AIDS and access to programmes, services, and resources. In most countries, the situation of persons with disabilities is further compounded by societal barriers that hinder their full and effective participation in society, including access to education. Despite the growing relationship between HIV/AIDS and disability, persons with disabilities have not received sufficient attention within national responses to HIV and AIDS. Furthermore, existing HIV prevention, treatment, care and support programmes generally fail to meet their specific needs. Persons with disabilities are often excluded from HIV education, prevention and support services because of assumptions that they are not sexually active or do not engage in other risk behaviours such as drug use.

Sexual and reproductive health service providers may lack knowledge about disability issues, or have misinformed or stigmatizing attitudes towards person with disabilities. Services offered at clinics, hospitals and in other locations may be physically inaccessible, lack sign language facilities or fail to provide information in alternative formats such as Braille, audio or plain language.  In places where there is limited access to medication, persons with disabilities may be considered a low priority for treatment.

Women and girls with disabilities are especially vulnerable to sexual assault or abuse.  Persons with intellectual impairments and those in specialized institutions are also at particularly high risk. Around the world, children with disabilities are a large proportion of the children and persons with disabilities not enrolled in school, which results in their exclusion from vital sexual and reproductive health education that is often provided in school settings. Low literacy levels and a lack of HIV prevention information in accessible formats, such as  Braille make it all the more difficult for persons with disabilities to acquire the knowledge they need to protect themselves from being infected.

report  by Public Health England, in advance of National HIV Testing Week, shows there are now nearly 110,000 people living with HIV in the UK – demonstrating the continuing transmission of a disease once viewed as a virtual death sentence into a manageable long-term condition.

But it warned that around a quarter of these, 26,100, are unaware of their infection and at risk of passing on the virus.

“We can’t overstate the importance of testing for HIV to ensure an early diagnosis”

Valerie Delpech

However, it noted “encouragingly” that the proportion of people diagnosed with a late stage of HIV infection fell from 57% in 2004 to 42% in 2013.

The report shows around 6% of gay and bisexual men are now living with HIV, rising to 13% in London – with 3,250 newly diagnosed in 2013, an all-time annual high.

It is estimated that over 7,000 gay men have an HIV infection that remains undiagnosed and that an estimated 2,800 men acquired HIV in 2013.

The figures underline the need to further increase both the numbers and frequency of HIV tests, which is critical to tackling the ongoing high levels of HIV transmission, said the report.

While the large majority of black Africans do not have the HIV infection, the report also highlighted the fact that one-third of the 40,000 black African heterosexual men and women living with HIV in the UK do not know they have HIV.

“There is a dangerous complacency in our society about the challenge of HIV”

Deborah Gold

Dr Valerie Delpech, head of PHE ‘s national HIV surveillance, said: “We can’t overstate the importance of testing for HIV to ensure an early diagnosis.

“In 2013, people diagnosed with HIV late were 10 times more likely to die in the first year of diagnosis, compared to those diagnosed promptly. People who remain unaware of their infection are also at risk of transmitting HIV to others,” she said.

“Knowing one’s HIV status is the key to both effective treatment, and to preventing onward transmission. This is why we are promoting the National HIV Testing Week,” she added

Deborah Gold, chief executive of the National AIDS Trust, said: “Whilst we have passed the 100,000 mark for the number of people living with HIV in the UK, there is a dangerous complacency in our society about the challenge of HIV.

“The high rates of undiagnosed HIV are unacceptable but we are failing across the NHS and in the community consistently to offer HIV tests to those who need them, especially heterosexual men and women,” she said.

Progress is possible but there is still an immense amount to do to get everyone with HIV diagnosed in good time and meet the UN 90-90-90 target of just 10% undiagnosed,” she added.

 

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Helping disabled children cope with bullying

Children with a disability may be bullied. If this happens, it is important that action is taken to stop the bullying. That goes without question. However we  always cannot  protect our children from the bullies  so it is important to help  them build the resilience required to prevent bullying having the devastating impact it can have on a child’s life.

The points raised below may help you in bully-proofing your child

Do

Encourage Positive Emotions – It is essential that we provide o children with opportunities to have positive emotions. This sounds simple, but it’s easy to get distracted by practicalities of parenting so that we fail to provide them with enough opportunities to be joyful. Encourage children to find pleasure and humour in life. Although we should never overlook or fail to discuss their struggles, we should consistently provide children with opportunities to develop positive emotions hope by offering them situations in which they feel confident and encouraged.

Provide Social Support – The more our children feel like they have a social support from their family, the better they will handle negative social interactions outside the home. It’s important to make time to talk to children and to just be with them. Even if a child, particularly a teenager, is resistant to confiding, don’t give up. Try to find ways to let them know that you are there for them when they are ready to open up.

An extended family circle is also beneficial. Many children aren’t comfortable talking to their parents about certain things, but they may have a relative or family friend who they trust. The same holds true for their friendships with children who have a positive influence on them.

Even a child who is isolated from peers will do much better with family support. As he or she struggles to make friends, you can be helpful by exposing them to positive social situations: i.e. volunteering with them, taking them to community events, or participating in activities with friends of ours who have children around the same age. It is important to facilitate the forming of these social connections without being critical or providing too much pressure.

Find an Area of Interest– Helping children to find something that interests them and that they can excel in is a gift that can shape their lives.  Get them involved in activities that help them feel good about themselves. Provide them with a variety of opportunities to find what specifically appeals to the. It is important to support them in their excitement. It is also important not to confuse false praise with encouragement. Children can tell the difference, and they often feel confused when our compliments don’t match their accomplishments.

Teach strategies for coping with stress – Children must be taught how to calm themselves down when distressed or feeling aggressive. We can teach them to be aware of themselves and their emotions, while learning to regulate their reactions. It is important to help them develop the ability to remain calm, even in the face of bullying. The ability to see what is going on in their own minds and the minds of others will help children to recognize their own reactions and understand others better, so they can more effectively cope with bullies.

Promote Problem Solving Skills – To equip children with invaluable problem solving skills, we must show them how to be flexible in their responses. If a child faces a challenging situation, it is important to sit down with them and encourage them to think about the many possible courses of action available and which will yield the most benefit.  If, for example, they endure teasing from a friend, what can they do? Is revenge really the best option? Can they joke back and not “take the bait?” Does ignoring it really solve the problem? Should they talk directly to the friend about how the teasing makes them feel? Is it better for an adult to be present in the conversation?

We can teach our children to always ask themselves, how can I get help? How can I get more l support? And remember, the more adaptive we are in dealing with our own problems, the more adaptive they will be with theirs.

Orient Them Toward Future – Part of ensuring our children stay hopeful involves orientating them toward the future. Helping them plan for their future doesn’t necessarily mean knowing what college they want to get into or how many children they plan to have. It also doesn’t mean helping create a fantasy of a future that could never exist. It is more a matter of helping them focus on their real, everyday goals, such as a desire to visit a certain city or learning to drive a car. It can be a matter of making them aware of a heroic person who inspires them or introducing them to new situations that open them up to new ideas and opportunities.

Columnist Dan Savage started the “It Gets Better Project” to encourage struggling young people to have faith that they can get through bullying and adversity and one day enjoy a happy and fulfilling life. This message is one from which every adolescent can benefit. Teaching children that the future holds brightness and possibility is a lesson that can lift them through low times.

Lead by Example – In each of the previous suggestions, it is vital to lead by example. Telling children what to do and how to behave will rarely influence them as much as showing them how to handle difficult situations. Exposing them to the constructive approaches we take in finding solutions to problems in our lives encourages them to handle matters in a similar way. We should always aim to act in a way that is consistent with our values and provide our children with a model to do the same.

Don’t

Support Maladaptive Thinking – Negative thoughts contribute to a child’s insecurities and low self-esteem. Allowing our children to focus or dwell on a perceived weakness or negative trait is not constructive. Instead, encourage them to challenge their hostile self-criticisms and self-attacks. This form of maladaptive thinking, which is referred to as the “critical inner voice,” will lead a child to feel mentally defeated and victimized by circumstances.

The critical inner voice can contribute to stress, anger, and depression. It can make children gravitate toward activities that leave them feeling bad and avoid those that make them feel good. It may, for example, encourage them to be isolated, “Don’t leave your room. No one out there wants to see you.” It can encourage them to act out, “Why even go to school? You’re too stupid to learn anything anyway.” Allowing children to indulge in reflecting or acting on these critical inner voices can have harmful effects. Instead, encourage them to identify these negative thoughts and challenge them in their actions. Conquer Your Critical Inner Voice, a book I co-authored with Dr. Robert Firestone and Joyce Catlett, provides exercises for identifying and challenging this critical inner voice.

Be Critical, Coddling, or Ignore Issues – We all know the importance of supporting our children in new challenges. However, when our children take on something new to them, it is often hard to find a balance between pushing them too hard and doing too much for them. Ideally, we should try to put them in slightly novel situations in which they’re slightly uncomfortable and we’re there to back them up. We don’t want to over-push our children, leading them to feel abandoned or afraid. In this same way, we don’t want to overprotect them by speaking for them or stepping in too often, which teaches them to feel dependent or helpless. Most importantly, we should never pretend not to notice that there is a problem. Ignoring the fact that our children are struggling will only leave them feeling more alone than ever.

Dwell on the Negative – When a child goes through a negative experience, it is important to give them the platform to talk about it. Encourage the child to express what happened and how it made him or her feel. We can help children resolve any traumas they experience by reframing the experiences, so they can learn from them. This is not to say we should attempt to alter reality or ignore the fact that they were hurt by something. However, the more people mull over painful events or tell themselves stories about being victims, the worse off they are in terms of building resilience.

It is really unhelpful to promote the idea that the world is unsafe or that change is not possible. Instead, we should tell our children positive uplifting stories about our own challenges. “I used to be so shy that I sat alone every day at lunch. Then one day, I made a friend at school, and slowly I started to feel more and more comfortable talking to him. Then I grew more comfortable talking to other children. Eventually, I had a close group of friends who never made me feel embarrassed or shy.”

Avoid Dealing With Painful Events -When a traumatic event occurs, we shouldn’t encourage children in engaging to simply steer clear of anything that reminds them of the occurrence. For example, if a child was once bullied on a certain street, while carrying a certain backpack, we should help them to talk about the experience and help them process their reactions to it. Having them just take another street or throw away the backpack won’t resolve the experience in their minds. In fact, avoidant coping strategies will make them less resilient.

Never avoid talking about painful events. One of the biggest challenges in stopping bullying is that many children fail to disclose incidents in which they were abused. When we encourage our children to talk about bad things that happen to them, we help them make sense out of these experiences. Memories that are not made sense of by being expressed as a coherent narrative can have negative effects on children later in their development. They may start to show behaviour problems, increased fears, stress or anger, and become less social. Creating a coherent narrative helps make meaning out of experiences and form a sense of personal agency and closure.

So even if we are not able to protect our children from the bullies we can help them build the resilience required to not allow bullying to have the devastating impact it is capable of having on a child’s life. And this will provide them with an essential coping tool they can take with them into adulthood.

 

Mothers of autistic children in crisis. The need for better services

In the UK and in other counties, public services are being cut. The cuts are made  to decrease national debts and to cut taxation because political parties want to be seen as making tax cuts to win over voters. Cuts in services have the greatest impact on the most vulnerable people. Amongst these are the mothers of  those severely autistic children. whose behaviour is challenging Fortunately few mothers end up in such crises that they kill or attempt to kill their child, but many live in fear of aggression and with too little support. The father of the child is often absent from their lives.

This post is to highlight two things:

  • the need for good educational and behavioural management services for autistic children from the time they are very young. These services decrease the frequency and severity of behaviour which will become increasingly difficult to manage as the child gets bigger;
  • the need for effective  support, respite and residential services for young people and adults whose needs are greater than their families can provide.

Without these services more tragedies will happen. Some will be dramatic, others the undramatic dreading of each new day.

I was told my autistic son exhausted all the services when he was a teen, including the state mental institution after which he was returned home to my care. At times I feared for my life. I feared for the lives of my other children. I was only told my son had failed all the services my county had to offer and that I should call the police when he became violent’


 

A 6-year-old autistic child from Newport, Oregon, died after his mother, Jillian McCabe, allegedly threw him off of the Yaquina Bay Bridge. McCabe called police Monday night and admitted she had killed her son London McCabe, and the boy’s body was discovered in Yaquina Bay shortly afterwards. Jillian McCabe, 34, of Seal Rock appeared in Lincoln County Circuit Court  for a preliminary hearing on charges of aggravated murder, murder and first- and second-degree manslaughter. A motion is expected to be filed later by Jillian McCabe’s attorneys to request a determination on her fitness to proceed, court records show.


 

Kelli Stapleton pleaded guilty to trying to kill her child by carbon monoxide poisoning, and was sentenced to between 10 and 22 years in prison. She has previously  blogged about her struggles with care and treatment for her daughter, Isabelle, She pleaded guilty to shutting herself and her daughter, then 14, in a closed van with two lighted charcoal grills. Although found unconscious, both recovered.  The plea to a charge of first-degree child abuse averted a trial for murder and led to a three-day sentencing hearing. Supporters urged leniency for their friend who, they and Stapleton’s former husband have said, was beaten and hospitalised as a result of her daughter’s increasingly violent outbursts.


Gigi Jordan was convicted of manslaughter in the first degree for giving her 8-year-old son Jude, who suffered from autism, a fatal dose of prescription pills . She faces 5 to 25 years in prison. Her defence team managed to convince the jury with a strange tale, claiming Jordan had been trying “to save [Jude] from a life of sexual torture” at the hands of his birth father. Jordan said her husband at the time was plotting her murder, and she didn’t want the boy to end up back with his abuser. Both men denied the allegations. The prosecution argued that Jordan killed her son, who was nearly non-verbal, because of his severe autism.


 

‘You guys do not have a clue. I want to kill my son! Yes I want to get help but let’s be real there is no real help any more. There is no help because there is no money in our agencies to help. Thank you all who keeps the tax cut stuff going. You have destroyed the safety net for people with mental illness. The only treatment I have been able to find for my 29 year old son is a day program that offers some group therapy. For me it’s just a babysitting service. My son is mentally ill, autistic, and mildly retarded with rage issues. He is 6′ and 240 lbs. He is mean.. My family has  drifted away because of his behaviour. I am in fear of my own safety. So yes I want him dead or gone. I have even thought about putting him out on the street in an unsafe area of a major city near me and just let the streets take care of him. He will piss off the wrong  person and he will be dead.’


 

 Health officials say the murder-suicide of a Canadian mother and her autistic son should serve as a wake-up call that drastic changes need to be made within the system.The bodies of 40-year-old Angie Robinson and her 16-year-old son Robert were found inside their home in Prince Rupert, British Colombia.Robert could not speak and would often express his frustration by head-butting walls and people and pushing and shoving his mother.A suicide note left  and her final Facebook post, showed his mother  felt she could longer manage  Robert and that Family Services could not provide adequate support.

Causes of learning disabilities and their impact on health

The World Health Organization (WHO) has defined learning disabilities as a state of arrested or incomplete development of mind. Somebody with a general learning disability is said to have a significant impairment of intellectual, adaptive and social functioning. A learning disability is not acquired in adulthood and is evident from childhood.

The term general learning disability has now been recommended in the UK to replace terms such as mental handicap or mental retardation. A child with a general learning disability or intellectual impairment finds it more difficult to learn, understand and do things compared with other children of the same age. The degree of disability can vary greatly, being classified as mild, moderate, severe or profound.

General learning disability is different from from specific learning difficulty such as dyslexia which means that the person has one difficulty such as in reading, writing but has no problem with learning in other areas.  It is characterised by generally poor performance in tasks such as learning, short-term memory and problem solving.

People with intellectual disabilities have an increased prevalence of health problems and their health needs are often unrecognised and unmet. For example, anxiety disorders are the most prevalent of the major mental illnesses and are present in 15–20% of the population but for people with intellectual disability, the prevalence of anxiety disorders has been shown to be much higher, particularly for hose with a mild to moderate intellectual disability. This is likely to be because they are aware that they are functioning less well than other people and because they find it significantly harder than others to cope with the demands of everyday life Anxiety disorders in people with intellectual disability can often be overlooked. Communication difficulties may make it harder for the person to describe their feelings and fears. Their difficulties may result in aggressive or destructive behaviour when they find situations difficult to cope with or are trying to avoid something which they find stressful

Although life expectancy is increasing, with people with mild learning disabilities approaching that of the general population, the mortality rates among people with moderate to severe learning disabilities are three times higher than in the general population, possibly due either to the impact of the cause of the disability, complex additional physical difficulties or because of less effective health care than the general population. The median age at death for people with learning disabilities is about 25 years younger than for those who do not have learning disabilities.

A classification of mild, moderate, severe and profound has been used to describe the degree of learning disability. However, this classification is in many ways inappropriate because each person with general learning disability must be assessed and treated as an individual. A person’s degree of intellectual impairment provides very little information about a person’s social, educational and personal needs, and the kind of help and support

About 2% of the population is estimated to have an intellectual impairment. It has been estimated that 1,191,000 people had learning disabilities in England in 2011, including: 286,000 children (180,000 boys, 106,000 girls) aged 0-17. As all children are assessed and monitored in infancy and all children attend school, it is likely that all or almost all of these children are receiving services to support them and their families

However of the 905,000 adults aged 18+ (530,000 men and 375,000 women), estimated to have an intellectual impairment only 189,000 (21%) are known to learning disabilities services. This means that the vast majority of adults with an intellectual impairment are not receiving services which would provide support for them and their families

The population for people with learning disabilities shows a sharp reduction in prevalence rates after age 49 due to reduced life expectancy. A sharp increase in prevalence for those under 20 may reflect increased survival rates among more severely disabled children.

The number of people with intellectual disabilities increased by 53% over the 35-year period from 1960 to 1995 as a result of improvements in socio-economic conditions, medical  care  and access to services for children

The causes of intellectual impairment include:

Genetic disorders such as Down’s syndrome, fragile X syndrome, Klinefelter’s syndrome and Turner syndrome

Metabolic disorders such as Tay-Sachs disease, Gaucher’s disease, Niemann-Pick disease) and Hurler’s syndrome.

Nutritional deficiency such as iodine deficiency.

Damage caused before the child is born by infections such as rubella; or by drugs or alcohol.

Damage caused during labour by prolonged labour, trauma, and deprivation of oxygen

Accidental or non-accidental injury, severe infections, poisoning or malnutrition   in infancy or childhood

For many people with an intellectual impairment there is no known cause