Direct payments
September 3, 2016
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If you, or the person you are looking after, are assessed by the local council/trust as needing support, then you or they have a right to ask for a direct payment instead of having the support arranged by the local council/trust.


This information applies to people living in England, Wales, Scotland & Northern Ireland.


How do I get a direct payment?

To get a direct payment you firstly need to have an assessment from the local council/trust. The assessment and the process will differ depending on if you are a carer or the person being looked after.

For further information on assessments please click the relevant link below.

 

If you, or the person you are looking after, are assessed by the local council/trust as needing support, then the local council/trust will work out how much it would cost to provide such support (generally called a personal budget). This is then broken down into any amount you or the person you are looking after might have to pay (if any – further information on charging is available in our assessments factsheets – see below) and any amount the local council/trust has to pay.

You can then choose to ask the local council/trust to arrange the support themselves or you can ask for a direct payment. A direct payment is the amount of money that the local council/trust has to pay to meet the needs of you or the person you are looking after, and which is given to enable you/them to purchase services that will meet your/their needs (as assessed by the local council/trust).

It is sometimes possible for the person you are looking after to pay you or another family member or friend to meet their needs (see “If the person I am looking after gets a direct payment can they use this to employ a family member?” for further information on employing family members).

Although most people will be given a direct payment if they ask for one there are some categories of people who cannot get a direct payment, for example those under various orders or treatments for drug or alcohol dependence.

If the person being assessed does not have mental capacity, or does have mental capacity but would be unable to manage a direct payment, then someone can be appointed to manage the direct payment on their behalf.

Note: If you or the person you are looking after already receive support from the local council/trust but would like to receive a direct payment instead, you can ask the local council/trust to make this change.

Note: Direct payments are not compulsory and if you would rather the local council/trust arrange the support they should do so. It can also be possible to have a combination of support from the local council/trust and direct payments.

 


How much will the direct payment be?

The direct payment must be an amount sufficient to meet the needs the local council/trust have assessed you or the person you are looking after as having.

However, you/they might have to make a contribution towards the cost of meeting your needs (further information on charging is available in our assessments factsheets – see above).

If the person you are looking after uses the direct payment to pay for a care worker then there might be additional costs involved in this (ie recruitment costs, auto enrolment pension costs, national insurance and income tax cost etc.). If so then the direct payment amount must be sufficient to cover these costs.

 


What can I spend the direct payment on?

The direct payment must be used to meet the needs the local council/trust assessed you or the person you are looking after as having.

The local council/trust has to agree that what you/they spend the direct payment on will meet these needs.

Example: If you are a carer and one of the needs the local council/trust assessed you as having was ‘help with the cost of driving lessons to help you continue in your caring role’ you could ask for a direct payment to meet this need and could use the direct payment to purchase driving lessons.

Example: If the person you are looking after is assessed as needing ‘a care worker for an hour a day’ they could ask for a direct payment to meet this need and could use the direct payment to employ someone of their choice to care for them for one hour a day (if the local council/trust agree that this person would meet this need). It is sometimes possible for the person you are looking after to pay you or another family member or friend to meet their care and support needs (see “If the person I am looking after gets a direct payment can they use this to employ a family member?” for further information on employing family members).

 


Will getting a direct payment affect any benefits that I or the person I am looking after receives?

Direct payments that you are given as a carer to purchase services to meet your needs as a carer are not counted as ‘income’ for any benefits you receive, and so would not affect any of your benefits.

Direct payments that the person you are looking after is given to purchase services to meet their needs are not counted as ‘income’ for any benefits they receive, and so would not affect any of their benefits.

However, if the person you are looking after pays you or anyone else with their direct payments, then this would count as ‘earnings’ and might affect any benefits you, or anyone else being paid, gets.

 


If I or the person I am looking after gets a direct payment would I or they have any responsibilities?

If you get a direct payment there will be various responsibilities.

Everyone receiving a direct payment must keep records and submit accounts to the local council/trust showing how the money was spent. The local council/trust should discuss with you what the monitoring process is.

In addition, if the person you are looking after has been assessed as needing a care worker, and if they have been given a direct payment to purchase this service, then depending on how they purchase this service, they (or someone managing the direct payment on their behalf) might be taking on the responsibilities of an employer – see section below.

 


If the person I am looking after gets a direct payment to purchase a care worker does this mean they become an employer?

Using a care agency

If the person you are looking after uses a care agency to purchase this service, then the care agency would be the employers, and the person you are looking after would not be taking on the responsibilities of an employer.

If the person you are looking after wants to find care agencies in their area they could ask their local council/trust if they have a list of local care agencies and they could use one of the following:

  • In England the Care Quality Commission is the health and social care regulator and has an online directory of registered independence care services.
  • In Wales the Care and Social Services Inspectorate Wales is responsible for inspecting social care and social services and has an online directory of registered care services.
  • In Scotland the Care Inspectorate regulates and inspects care services and has an online directory of registered care services.
  • In Northern Ireland the Regulation and Quality Improvement Authority is the independent health and social care regulator and has an online directory of registered care services.

Employing a care worker directly

If the person you are looking after employers a care worker directly (even if this is a family member or friend), then they will be taking on the responsibilities of an employer.

This can seem daunting, however, in many areas of the country there are organisations which can help with these responsibilities. You can ask your local council/trust about organisations in your area, and you can also have a look on the Resource Directory from Disability Rights UK which is a tool to help you find regional and local services that may be able to offer different types of support and advice, including support with direct payments.

Some examples of employment responsibilities:

  • check the references of the intended employee and find out if they have had an up to date Disclosure and Barring Service (DBS) check
  • make sure the intended employee has the right to work in the UK
  • set up a system for paying wages, deducting tax and national insurance and keeping records for the Inland Revenue
  • ensure that the employee has the annual leave they are entitled to under ‘Working Time Regulations’, any maternity/paternity/sick pay they are entitled to and ensure you comply with auto enrolment duties
  • do a check to ensure that there are no potential health and safety risks to the employee because of the care they will be providing, as well as removing any potential dangers in your home that could put them at risk
  • ensure that you have suitable insurance cover (ie employer’s liability insurance and public liability insurance)

This is not a definitive list and if the person you are looking after is considering becoming an employer they should seek advice on their full responsibilities.

If the person you are looking after does want to employ a care worker and wants to know how to find care workers in their area, then they could ask their local council/trust if they hold any information on care workers in the area and they could place a job advert on websites like Gumtree and the government website Universal Jobmatch.

There are some useful websites which have helpful information about employing care workers:

  • ACAS provides advice and information to employers and employees and have some information on employing personal care workers and a guide for new employers.
  • Being the Boss is a peer support website run by people with disabilities who aim to share knowledge, support and information around employing personal assistants.
  • Wales only – Dewis Cymru provides advice and information on direct payments and on employing personal assistants.
  • Scotland only – The Scottish Personal Assistant Employers Network (SPAEN) is a membership organisation which supports people with disabilities and/or long-term conditions or impairments to use a direct payment to employ personal assistants. They offer a range of supports and services to enable people to engage their own staff.
  • Scotland only – Self-Directed Support Scotland is a one one-stop-shop for information about self-directed support (including direct payments) for people who use social care services. It provides information about direct payments and links to local support organisations that can help you decide about employing care workers and to set up and manage your direct payment.
  • Northern Ireland only – The Centre for Independent Living provides advice and information on getting direct payments, using personal budgets and employing carers and personal assistants.

 


If the person I am looking after gets a direct payment can they use this to employ a family member?

If the person you are looking after gets a direct payment to purchase a care worker they might want to employ someone they already know to provide the care, such as a family member. However, there are rules around employing family members which vary depending on whether the person you are looking after lives in England, Wales, Scotland or Northern Ireland.

In England the rules are that:

  • The person you are looking after cannot normally use the direct payment to pay a family member they live with to provide them with care. However, if the local council agree that this is the most effective way of meeting their needs then it is sometimes possible. For example, it might be necessary if there are religious reasons or communication reasons (other reasons may also count as necessary).
  • The person you are looking after can use the direct payment to pay a family member who does not live with them to provide them with care (as long as the local council agree that this family member will meet their needs).
  • The person you are looking after can use the direct payment to pay a family member (regardless as to whether or not they live with them) to provide the management and administration of the direct payments, where the local council think that this is necessary.

In Wales the rules are that:

  • The person you are looking after can use the direct payment to pay a family member who lives with them to provide them with care and/or management support, but only if the local council is satisfied that this is the best way of promoting and delivering their outcomes.
  • The person you are looking after can use the direct payment to pay a family member who does not live with them to provide them with care and/or management support (as long as the local council agree that this family member will meet their needs).

In Scotland the rules are that:

  • The person you are looking after can use the direct payment to pay a family member (regardless as to whether or not they live with them) to provide them with care if the local council think that this is appropriate and/or the best way of meeting the person’s needs. For example, it might be necessary if there are religious reasons or communication reasons (other reasons may also count as necessary) or because the right support is not available (ie in a rural or remote area). However, this is not the case if the local council believes that the family member is under undue pressure to agree to the arrangement, or if the family member is a guardian or has financial or welfare power of attorney for the person being looked after (in which case the family member cannot be paid via the direct payment of the person you are looking after).

In Northern Ireland the rules are that:

  • The person you are looking after cannot usually use the direct payment to pay their spouse or partner, or anyone who lives with them (unless that person is someone who has been specifically recruited to be a live in employee) to provide them with care, unless it is an exceptional circumstance. For example, it might be an exceptional circumstance if there are religious reasons or communication reasons (other reasons may also count as exceptional circumstances).
  • The person you are looking after can use the direct payment to pay a family member who does not live with them to provide them with care (as long as the local trust agrees that this family member will meet their needs).

Note: For England, Wales, Scotland and Northern Ireland, if the person you are looking after does want to employ a family member, try to think of an many reasons as you can as to why that family member would be the best person to provide the care (unless the family member is an exempt person in Scotland).

Source: Carers UK

Alzheimer’s Caregivers Face Unanswered Questions
August 25, 2016
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Hindsight may be 20/20 but, when it comes to being an Alzheimer’s caregiver, foresight is essentially non-existent. There are many things that seem obvious after you’ve gone through them with a loved one who has the disease, but that you’d never have considered, prior to experiencing them. What do most caregivers wish they’d known when they began their journey with their loved one? An illuminating AgingCare.com surveyoffers some insight:

I wish I’d known…     how to wave my magic wand and have family understand what’s happening to Mom.” how to place Dad in a home without them taking him to the cleaners.” how difficult taking care of an Alzheimer’s patient really is. Had I really known what I stood to lose, I never would’ve taken this on.”how to find the right doctor.”that I’d soon miss the days when Dad would tell the same story over and over again; now he can’t even talk.” that a loved one doesn’t have to be put in a nursing home if

they don’t want to be.” how to keep him healthy and engaged as his mobility and memory declines.”how hard it really is to be a caregiver.

What 24/7 really meant. How to deal with the day-to-day craziness.”

what’s the best medicine to help them sleep through the night.” how to ease their anxiety and frustration.” when it’s time to move them into a facility, and how to get them to go if they don’t want to.”that I’d have to eventually accept that, no matter how active and alert and precise Mom used to be, this is her now. ” how to get him to take a shower.”

what to expect as Alzheimer’s progresses.”

how to get help.”how long this will last.”Some of these questions have answers; some don’t. Some answers are

simple; others are complex. Even the world’s leading experts in Alzheimer’s don’t know everything there is to know about the disease. In fact, very little is certain when it comes to the ailment’s causes and underlying pathology

Standing Tall Against the Stigma of Dementia

We fear Alzheimer’s. We fear becoming the stereotypical dementia patient: slumped in a wheelchair, staring out the window, our minds as blank as our gaze.From this fear, a powerful and pervasive stigma is born. A stigma fueled by a lack of legitimate knowledge about the realities of the disease. A stigma with a crippling ripple effect that contributes to the isolation of those with Alzheimer’s and their families. Even long time friends can vanish when an individual is diagnosed with Alzheimer’s. They may feel uncomfortable in the presence of a personwith cognitive impairment, they may not know what to say, or be worried that they might do something to upset them. This abandonment, benign or not, can take a toll on family caregivers:

My ‘friends’ have pretty much disappeared. No phone calls, not even an email. It’s a lonely life. Now that Mama lives with me, I have to initiate gatherings with my friends—they seldom call me anymore.”Friends are hard to find, or they act like they don’t even know me—it’s as if my entire life is a stigma and they don’t want tobe seen with me.”These are the typical laments of family members of those with Alzheimer’s; and the situation is no less frustrating for those diagnosed with the disease.

What to Expect as Alzheimer’s Progresses

The first question many people have after a family member has been
diagnosed with Alzheimer’s disease is:

What can I expect?”


It’s a query without a concrete answer, since cognitive impairment progresses differently in different people. Your mother may maintain her sweet, nurturing demeanour, in spite of the disease, or she may start exhibiting uncharacteristically selfish behaviour. Your husband’s sense of suitable behaviour may stay intact, or it may become warped, causing him
to make inappropriate sexual and racial remarks in public.A few things, however, become relatively certain when Alzheimer’s invades your life:

 

Your role will change — and it won’t be easy


Cognitive decline in your loved one may happen fast or slow, and it will likely be unpredictable. One minute, your wife may be chatting away, happy as a clam, and the next, she may become violent, lashing out for no apparent reason. Like your loved one’s mood, your role as a caregiver will always be in flux. In the beginning, you might be mostly called upon to help out with simple tasks—laundry, shopping,cooking. As your loved one’s cognitive abilities decline, you might eventually need to provide more hands-on care with activities such as bathing, dressing and going to the bathroom. There may also
come a time when you and the rest of the family will have to seriously consider placing a loved one with Alzheimer’s into an assisted living community or nursing home. The variability of your journey as a caregiver will cause emotional, relational and financial stress, whichyou need to prepare for properly.

You’re in it for the long haul

Nearly one-third of Alzheimer’s caregivers provide assistance to their loved ones for more than five years, according to statistics from the Alzheimer’s Association’s “2014 Alzheimer’s Disease Facts and Figures Report.” When the billions of hours of unpaid care provided by relatives are divided evenly amongst the millions of informal Alzheimer’s caregivers in America, the typical family member will look after their loved one for about 22 hours each week.

Your loved one won’t be the same

Alzheimer’s disease causes the death of neurons and the shrinkage of brain tissue. Depending on which areas of the brain are impacted, an individual’s personality can become permanently altered. There may come a day when your wife of 40 years no longer remembers who you are, or your once-loving father starts screaming at you every time you walk into the room. When faced with these heart-rending situations, the only way to cope is to give yourself permission and time to grieve the loss of the loved one you once knew, and try to make peace with who they are right now.

 

You won’t be the same

As any long-term caregiver will tell you, care giving can change your personality says these changes may be either positive or negative. “Much depends, of course, on personal insight, general openness to change, feelings for the person you are caring for and your own physical and mental health.In the end, whether the changes that remain with you are positive or negative may rest with how you view life in general.”

 

Guide to Dementia Care at Home

Even though most dementia develops from irreversible causes, there is still much that families can do to help their loved ones continue to function as well as possible for as long as possible. Creating a safe, comfortable and supportive environment for someone with dementia can be achieved through the below standard practices.

General Dementia Care Techniques

Researchers, doctors and eldercare professionals are still discovering and refining what works and what doesn’t when it comes to dementia care, but the following tactics have proven effective over time:

  • Develop a Daily Routine
    Assess your day to see if there are routines you can put in place to help things go more smoothly. Most people like to have a sense of what’s coming next, and a daily rhythm can be especially helpful for those dealing with general confusion. If there are times of day when your loved one is less confused or more cooperative, plan major activities for those times.
  • Encourage Independence
    Studies have found that a technique called “graded assistance,” combined with daily practice and positive reinforcement can go a long way to maintaining functional independence. Graded assistance is a method of helping someone accomplish a task with the least amount of aid possible, using a spectrum of assistance from verbal prompts to physical demonstration, physical guidance, partial physical assistance and complete physical assistance.
  • Use Music
    Studies have shown that music soothes and can help reduce problem behaviors, such as agitation and aggression (especially during mealtimes and bathing). However, it’s important to note that the music should be something that the person with dementia prefers, not necessarily what the caregiver thinks would be nice to listen to. Playing your loved one’s favorite types of music is typically the most effective form of dementia therapy.

Here are some more tips from the National Insitute on Aging (NIA):

Communication

  • Minimize Distractions: When you’re preparing to have a focused conversation, turn off the TV and radio.
  • Get Your Loved One’s Attention: Call him by name, and make sure he’s looking at and listening to you before speaking.
  • Speak Simply and Directly: Choose simple words and short sentences and use a gentle, calm tone of voice. Make sure to treat the person with dementia like an adult; avoid taking a condescending tone.
  • Be Patient: Allow enough time for a response. Be careful not to interrupt. If she is truly struggling to find a word or communicate a thought, gently try to provide the word she is looking for.

Bathing

Dementia can make bathing a frightening, confusing experience. Advance planning can help make bath time better for both of you.

  • Limit Bathing: Try replacing some showers with sponge baths. Depending on how active your loved one is, he or she may not need a full shower every day.
  • Plan Ahead: Gather everything you need ahead of time, including a towel and change of clothes. Get the water going and set to the right temperature.
  • Warm the Bathroom: Undressing can be especially unpleasant when it’s cold. Turn up the heat as needed.
  • Narrate What’s Happening: Tell him what you are going to do, step by step, and allow him to do as much as possible.
  • Minimize Safety Risks: Use a handheld showerhead, shower bench, grab bars, and nonskid bath mats. Never leave the person alone in the bath or shower.

Dressing

For those with dementia, getting dressed presents a series of challenges, from choosing what to wear, to figuring out how to properly take things off and put other things on, to manipulating buttons and zippers. Here are some things you can do to simplify the process:

  • Encourage Independent Choice: Allow the person to choose from a limited selection of outfits. If she has a favorite outfit, consider buying several identical sets.
  • Arrange Clothes in Order: Elimintate the need for decision-making by laying clothing items out in order they are to be put on.
  • Provide Instructions if Needed: If the person needs prompting, provide clear, step-by-step instructions.
  • Choose Convenient Clothes: Clothing for dementia patients should be comfortable and easy to get on and off. Elastic waists and Velcro closures minimize struggles with buttons and zippers.

Eating

  • Limit Distractions: Ensure a quiet, calm atmosphere for eating. Limiting noise and other distractions may help the person focus on the meal.
  • Serve Small Meals and Snacks: Dementia patients may have limited appetites and attention spans. Plan on serving small portions and supplementing these with snacks.
  • Make Eating Easy: Use straws or cups with lids to make drinking easier. Serve finger foods if the person has trouble with utensils. Using bowls instead of plates may also help encourage independent eating.
  • Visit the Dentist Regularly: Maintaining a healthy mouth and healthy teeth is key to helping dementia patients eat appropriately.

Activities & Exercise

Incorporating physical and mental stimulation into daily routines is important for both caregivers and their charges. Here are some tips for making regular exercise and other activities a part of daily life:

  • Find Mutually Enjoyable Activites: From daily strolls around the neighborhood, to game nights and regular outings, activities should be simple and fun for everyone.
  • Keep Expectations Reasonable: You may need to modify favorite activities to suit current abilities. Go slowly, take things step by step, and avoid frustration and overexertion.
  • Take Advantage of Organized Programs: Local senior centers often offer classes and activities suitable for those with dementia. You may also want to check into adult day services, which can be a good source of daily socialization for those with dementia and relief for caregivers.

Incontinence

As the disease progresses, many people with dementia begin to experience incontinence. Sometimes incontinence is due to physical illness, so be sure to discuss it with the person’s doctor. Beyond that, here are some tips for managing bathroom care:

  • Develop a Schedule: Take the person to the bathroom at regular intervals. Don’t wait for her to ask.
  • Watch for Signs of Discomfort: Is he unusually restless or pulling at his clothes? Take him to the bathroom.
  • Prevent Accidents When Possible: Take steps such as avoiding fluids after a certain time of night. If you are going to be out with the person, plan ahead. Know where restrooms are located, and have the person wear simple, easy-to-remove clothing.
  • Stay Calm and Positive: When accidents occur, minimize embarassment by dealing with them matter-of-factly.

Sleep Problems

Getting enough rest can help ensure optimal mental functioning for those with dementia. Try the following techniques to increase the likihood of everyone getting a good night’s sleep:

  • Keep Evenings Peaceful: When it’s getting close to bedtime, dim the lights and avoid stimulating activities such as watching television. You may find that playing soothing music or reading to your loved one helps him or her relax.
  • Make Bedtime Consistent: Help your loved one develop an effective internal clock by keeping bedtime within 15 minutes of the same time each night.
  • Maintain an Exercise Routine: Getting enough physical activity each day is key to sleeping deeply at night.
  • Avoid Caffiene: Limit coffee, tea and soda, especially after lunch and into the evening.

Hallucinations & Delusions

As the disease progresses, a person with dementia may experience hallucinations and/or delusions. The following techniques can be used to help manage episodes:

  • Avoid Arguing: Don’t disagree with the person about what she sees or hears. Try to respond to the feelings she is expressing, and provide reassurance and comfort.
  • Offer Distractions: Suggest a change of topic or activity. Sometimes moving to another room or going outside for a walk may help.
  • Turn Off the TV: Dark, moody or violent programming can be especially unhelpful for those who have difficulty distinguishing fantasy from reality.
  • Ensure Safety: Make sure the environment is free of objects that could be used to cause harm.

Home Safety & Wandering

Creating a safe environment is one of the most important aspects of caregiving and can prevent many stressful and dangerous situations. Caregivers of people with dementia often have to look at their homes through new eyes to identify and correct senior home safety risks.

  • Install Locks on Possible Exits: All windows and doors should be appropriately secured to prevent wandering. This may involve installing new and unfamiliar locks, or placing new locks where the person can’t reach them.
  • Remove Interior Locks: Avoid allowing your loved one to lock him- or herself into any room, including the bathroom. He or she may not remember how to unlock
  • Remove Dangerous Objects: This includes anything that could create a tripping hazzard and anything that could be used to cause harm.
  • Install Childproof Latches: Secure kitchen cabinets, linen closets and other storage spaces.
  • Ensure Proper Identification: Make sure that the person carries some kind of identification or wears a medical bracelet. If he gets lost and is unable to communicate adequately, this will alert others to his identity and medical condition. In addition, keep a recent photograph or videotape of the person with dementia on hand.

Driving

Driving generally isn’t safe for those in all but the earliest stages of dementia. Here’s how you can handle the transition:

  • Be Firm: Don’t allow your loved one to drive on “good days” but forbid it on “bad days.” Offer sympathy when he or she expresses unhappiness with the situation, but don’t give in.
  • Get a Doctor’s Help: The person may view the doctor as an “authority” and be willing to stop driving. The doctor also can contact the Department of Motor Vehicles and request that the person be reevaluated.
  • Take the Car Keys: If just having keys is important to the person, substitute a different set of keys.
  • Move the Car: If all else fails, disable the car or move it to a location where the person cannot see it or gain access to it.

Visiting the Doctor

Here are some tips for handling medical appointments:

  • Schedule Wisely: Try to schedule the appointment for the person’s best time of day. Also, ask the office staff what time of day the office is least crowded.
  • Give Short Notice: Don’t tell the person about the appointment until the day of the visit or even shortly before it is time to go. Be positive and matter-of-fact.
  • Bring Snacks and Activities: Bring along something for the person to eat and drink and any activity that he may enjoy.
  • Bring a Helper: Have a friend or another family member go with you on the trip, so that one of you can be with the person while the other speaks with the doctor.
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