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Respite Care
1.30 pm
Mr. Tony Baldry (Banbury): A little while ago, a constituent of mine, Mrs. Muriel Briggs, came to see me at a constituency surgery. Prior to that meeting, she had written to me to set out her specific concern. She wrote:
- "My youngest daughter, Rachel, 31 years, has learning disabilities through Down's syndrome and has respite care ... I am extremely grateful for this break of a total of five nights spread over four- weekly periods, and for which we pay the required sum.
It was not until 17 May 2000 that I received the enclosed notice showing that after a total of 28 days' respite had been reached there must be a break of 29 days without any respite care. I did not know about this and have had many, many months' concern and correspondence about Rachel's DLA benefits."
- "How can a disabled person who needs respite care in their own right as well as for their carer suddenly not need it for 29 days? To me it is a wrong rule of law by the DSS and I would hope you could possibly bring this to the notice of those in responsible positions to change the system. It would also appear to me that if an assessment has been made and agreement reached that such a person needs care, then that should be available without discrimination at any time, without losing benefits."
- "Disability living allowance care component (DLA)/attendance allowance (AA)".
- "Respite care stays affect the entitlement of DLA/AA. Claimants are responsible for informing the Benefits Agency of any changes in their circumstances and can be subject to large overpayment bills if the Benefits Agency have not been informed.
After 28 days in respite care, the claimants' entitlement to DLA/AA ceases while in care.
A note should be kept of all days spent in respite care, the day of admission does not count and is treated as a day at home. The day of discharge, however, does count as a respite day. Once a total of 28 days has been reached then there must be a break of 29 days without any care admissions before DLA/AA can be reinstated for the next 28 day period."
- "My constituent's daughter has a total of five nights respite care spread over a four weekly period, for which they pay a sum required by Oxfordshire County Council. It works out at approximately a day a week--invaluable for aged parents looking after a young woman with learning difficulties.
I enclose a copy of a notice sent to my constituents by Oxfordshire County Council which says that once a person has received 28 days of respite care (and as far as I can see that is 28 spread out over whatever period) there then has to be a period of 29 days without any respite care whatsoever, i.e. every so often my constituent, somewhat arbitrarily, has to go for a whole month without the benefit of any respite care at all. What is the point of this?
If a person is assessed as being in need of respite care, surely it is in their and their carers' interest that that respite care is provided instantly. What is the possible point, other than simple cost saving, of arbitrarily withdrawing respite care from time to time?"
- "It may help to explain that DLA continues for 28 days after a person has been admitted to residential care, whether permanently or temporarily. For the purpose of calculating that period of 28 days, separate periods in care are linked and treated as a continuous spell if a person is readmitted within 28 days of discharge. This means that people who spend longer than 28 days away from the care home will be able to receive benefit for 28 days the next time they are admitted. However, people who spend fewer than 28 days away from the care home will either receive no benefit on re-admission or only the difference between 28 days and the time they previously spent in residential care. So people can only receive benefit for 28 days in total unless the relevant periods of residential care are separated by longer than 28 days."
For those of us who do not involve ourselves daily in the minutiae of social security regulations, they can seem like a secret garden. In order better to understand the matter, I approached Oxfordshire Welfare Rights, an extremely good organisation which is based in Oxford and is partially funded by, among others, the county council. It sent me its benefit bulletin, which states:
- "Going into Respite Care (RC) can seriously effect the benefits of both the carer and person needing care. People needing regular periods of RC need to plan carefully to avoid the loss of Disability Living Allowance--care component (DLA[cc]) or Attendance Allowance (AA), Invalid Care Allowance (ICA) and the disability premium payable with means tested benefits.
AA or DLA [cc] cease to be paid once a person has been continuously in 'special accommodation' for 28 days."
- "Special Accommodation includes NHS Hospitals, Private and Local Authority Residential Care and Nursing Homes etc. Two periods in special accommodation separated by less than 28 days are linked together and count towards the 28 day 'cut-off' period."
- "Different spells in hospital or 'similar institution' will be linked together and treated as one continuous period if the person has been re-admitted after less than 28 days...Without a 28 day break the person is treated as if they are spending a continuous period in hospital, even if they spent the majority of the period at home. The need to have 28 days at home can have particular consequences where the person is required to enter hospital at regular intervals for treatment or requires regular respite care...
An illustration of the practical effect of the linking rule is on the organisation of respite care packages by Social Services. A typical package might involve the disabled person being in hospital or residential care for 1 week in every 4. Under the linking rule, after 4 periods of respite care, the person will be treated as having been in hospital for 28 days as the periods at home are less than 28 days...
The need to organise a change in an established pattern of respite care is difficult for the disabled person, their carer and the care provider to arrange. It is difficult for the disabled person and their carers to understand these rules and to make careful record of the dates involved. It is also difficult for care providers to arrange such breaks when they are catering for the needs of a large number of regular users.
Oxfordshire Welfare Rights are regularly consulted by social services, Oxon Carer's Centre and other agencies about the effect of the 28 day linking rule. We have represented claimants at appeal hearings in cases where they have been overpaid benefit. The cause of the overpayment can be because: they have not understood the effect of the linking rule and have not informed the Benefits Agency of all periods in hospital; the Benefits Agency have given wrong advice on the effect on all benefits they are receiving; or the agency providing care has provided inaccurate information in reply to a Benefits Agency inquiry. The underlying cause has been the complexity of the rules."
I have begun to understand that regulations have not kept up with changes in practice. In some cases the regulations go back to 1975, which was before the introduction of care in the community. Furthermore, the regulations tend to repeat themselves. For example, the Social Security (Hospital In-Patients) Regulations 1975 were drafted before care in the community, when people went either to hospital or--to use the phrase in the legislation--"a similar institution" for long periods. If someone goes into hospital for a long period, it is fair and proper that after 28 days they cannot continue to draw benefits that they may previously have received. However, the legislation was drafted before it was anticipated that people would increasingly live in the community and enter respite care for short periods of time.
I pray in aid the discussion in the 1975 regulations of "prescribed accommodation" where people reside as patients or inmates. Clearly, the legislation was drafted when people spent a long time in hospitals, sanatoriums or other institutions. It was not drafted for a time when care packages increasingly meet the needs of both carers and those for whom they care in a commendably flexible and appropriate way.
I ask the Minister not to explain again how the rules work because I now understand that. Having heard representations not only from Oxfordshire Welfare Rights, but the Disability Alliance and the Carers National Association, which I shall mention in a moment, I hope that he will feel it is worth examining the 1975 regulations to see whether they can be brought up to date to take account of modern practice, which includes care in the community.
The Parliamentary Under-Secretary of State for Social Security (Mr. Hugh Bayley ): I have great sympathy with the hon. Gentleman's constituent. He acknowledged that someone who spends a long period in hospital at public expense should not simultaneously receive a welfare benefit that provides him or her with money that can be used to purchase care. I agree with him that in the case of a short stay in hospital of perhaps a week it would be unrealistic to cut off a benefit. Surely he agrees that there must be a dividing line between long stay arrangements--
Mr. Mike Hancock (in the Chair ): Order. You are stretching into your contribution, Minister. If you are making an intervention you must draw it to a close.
Mr. Bayley : I am grateful for your advice, Mr. Hancock. I am trying to debate the issue and search for a solution with the hon. Gentleman. Where would he draw the line if not at the present point?
Mr. Baldry : The line is not currently drawn between long and short periods of time. My constituent
sometimes goes into respite care for a single night to give her mother some respite--it is respite care for both of them. However, after respite care for 28 nights--the number is arbitrary--over 28 weeks, my constituent is not entitled to any more.
Mr. Bayley : I want to correct one point which the hon. Gentleman has made several times. The regulations do not, in any way, prevent respite care after 28 days. They withdraw the benefit that is provided to a person to purchase care for those days on which respite care is taken. The issue is whether benefit should be withdrawn, not whether someone should receive respite care.
Mr. Baldry : Whether the issue is the denial of respite care or the benefit with which to purchase respite care is a quibble. The effect on most people will be the same.
The Disability Alliance recommends that the simplest solution is not to count days in hospital or respite care cumulatively, but to count only lengthy periods taken at one time. Regulations could be drafted to make that distinction, so that someone who goes into hospital for a month or more would lose benefit after the first 28 days, but someone who regularly goes into hospital for respite care for a few days at a time would not lose benefit. I hope that the Minister will explain the logic of denying my constituent disability living allowance benefit with which to purchase respite care. She is not a young woman who spends long periods in hospital or any other institution.
I am not being quirky about the matter, as there is broad consensus that something must be done about the regulations. The Disability Alliance stated that
- "the greatest hardship is caused where the disabled person's pattern of hospital admission"--
- "consists of a few days every month. This is enough for them to start to lose benefit but rarely does it result in reduced costs. Many of the additional disability related costs remain. For example, someone still has to be paid to wash the windows, clean the house and cut the grass. Special equipment cannot be sent back for a few days every month, nor can specially made clothing or shoes, extra insurance on equipment still has to be paid, the cost of home adaptations is no less.
For the carer little changes, other than a drop in household income. They still have to clean and do laundry for the disabled person, and time spent caring becomes time spent hospital visiting.
The administrative cost of stopping and starting two benefits is high. Even more so for a disabled person who is also on income support and/or housing benefit and/or council tax benefit since all of these are affected by receipt of DLA and are also reduced after a period in hospital.
The definition of 'special accommodation' is extremely complex as it is dependent on how the accommodation is funded rather than what is provided. This means that mistakes are made by the Benefits Agency and benefit is stopped when it should not be. It also makes it very difficult for disabled people and their carers to work out what the effect on their benefit entitlement is likely to be."
- "The 28 day linking rule can leave carers in poverty and extremely confused about the benefits system. Carers and professionals find the different rules very hard to understand. It is not uncommon for carers to be pursued for overpayment of
- Invalid Care Allowance ... because they have failed to notify the ICA Unit of changes to their situation. Many carers are unaware that the few regular days spent by the person they look after in respite care, could mean the person's disability benefits and the carer's ICA could be affected."
- "The possible solution would be to make the qualification for ICA reliant on providing 35 hours care to someone entitled to DLA or AA rather than someone actually paid one of these two disability benefits."
- "Consideration could also be given to removing the disparity between the treatment of breaks due to hospitalisation and breaks caused by admission into temporary residential care/nursing care. CA would like to see the extra 8 week break afforded carers where there is a hospitalisation extended to situations where the break is due to a temporary admission to care."
1.51 pm
The Parliamentary Under-Secretary of State for Social Security (Mr. Hugh Bayley ): I congratulate the hon. Member for Banbury (Mr. Baldry) on securing a debate on this important issue. He has put his case clearly, and the Government will examine it. I hope that he and those to whom he has been speaking will also consider why such arrangements are in place. The hon. Gentleman said that the simple solution would be to pay disability living allowance to people who have periods of respite care of less than 28 days. That would be the simplest solution, but it would also be costly, which is why it did not commend itself to his party when it was in power and why it does not commend itself to the Labour party.
As a Government, we are keen to improve support both through the amount of respite care that is provided and through financial support to carers. We want to enable those who care for someone with a serious disability to receive the respite care that they and that person need. We must make choices about what that money can best be spent on to give the greatest possible support to the disabled person and to the carer. Respite care, as the hon. Gentleman said, is essential for many carers and disabled people. It provides a much needed break for carers who are often elderly and unwell themselves. It can be a lifeline in an emergency when a carer suddenly needs to be away from home and from the person for whom they care. It also provides a valuable change of scenery for disabled people.
Carers as a group tend to experience higher levels of stress than others. Short-term breaks can have a significant impact by reducing stress and helping carers to continue to care. In that way, respite care can help
disabled people to stay in their own homes or, in the case of disabled younger people, to remain in their parents' home for longer. People generally want to live in their own homes if they can. For some, going into long-term residential care can significantly impair their quality of life, and can lower their self-confidence. It can lead to a decline in activity and to a loss of independence. The Government are keen to promote independence by encouraging the provision of high-quality domiciliary and other community-based services, including respite care services and support for carers.Disabled people and carers are all different, so their needs for respite care will be different. When we draw up regulations governing social security benefits, we have to do so on the same basis for everyone. We therefore face a conflict, which we have tried to resolve by a mix of regulations. As the hon. Gentleman knows, when a disabled person goes into a care home for a short period of respite care, which has been arranged by a local authority, we continue to pay the care component of the disability living allowance for 28 days. For that period, we disregard the fact that the cost of care is being subsidised by the local authority, even though the person or his or her family may pay a fee for the respite care break. We disregard the local authority contribution because people have on-going care costs at home, which need to be met. It can also be disrupting for benefit to cease for what may be a short period.
However, resources for benefits are not unlimited. It has long been a principle that when someone receives care in accommodation that is supported wholly or partly from public funds, he should not generally receive benefits in respect of care needs at the same time. That is the reason for the rules that have applied since the introduction of the national insurance scheme more than 50 years ago.
The great majority of people who go into respite care have that care arranged for them by their local authority, as in the case that provoked the hon. Gentleman's interest in the issue. It is therefore right that people going into settings other than hospitals--such as residential care homes--should have the same rule applied to them. We are aware, of course, that when people are being cared for in a family setting, as in the case that the hon. Member drew to my attention, the operation of the linking rule is difficult. As a result, we modified the rule last year to reduce the period for which people are disqualified from receiving benefit. Since last year, neither the day of admission to care nor the day of discharge from care--or hospital--counts as days in care in relation to loss of benefit. That assists 50,000 people a year.
The Government's commitment to improve services for carers was set out in our national carers strategy, which was launched by the Prime Minister in February 1999. Breaks for carers were seen as a key part of that strategy. We provided an additional £140 million for respite care breaks over a three-year period starting in 1999. Since then additional funding has been provided to cover the years up to 2004. The carers special grant will fund three times as many breaks for carers in 2001 as it did in 1999-2000. The money available will rise to £100 million a year by 2003-04. That initiative will enable up to 75,000 more carers to receive a break.
As part of the national carers strategy, we agreed to review the financial support provided to carers through the benefits system, which is the issue raised by the hon. Gentleman. Towards the end of last year, we announced a package of improvements to disability and carer benefits worth £750 million over the next three years. In addition to the package for carers, we will extend the higher rate mobility component of DLA to severely disabled children aged three and four from April. That will provide extra help of £38.65 a week. This year, we will also increase the disabled child premium in income-related benefits to £30 a week, which is £7.40 a week more than normal uprating. The disability income guarantee will be introduced in April, which will help 130,000 of the poorest and most severely disabled people aged under 60, and ensure an income of at least
£142 a week for a single person and £186.80 for a couple. The measure will also benefit 30,000 families with severely disabled children.For carers, the carer premium in income-related benefits will be increased by £10 a week more than the normal uprating from April. We are targeting resources on low-income households in which long-term care is being provided. At the same time, we will raise the earnings limit in invalid care allowance from £50 a week to the lower earnings limit for national insurance contributions of £72 a week. Those benefits have been widely welcomed by many organisations. Diane Whitworth, the chief executive of the Carers National Association, said:
- "I am writing with great pleasure, to welcome the announcement last week which will boost carers' benefits...this is the first major series of changes to the benefit for 15 years. The measures provide a sensible balance"--
- It being Two o'clock, the motion for the Adjournment of the sitting lapsed, without Question put.
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