Response by National Disability Authority to Review of Disability Allowance
National Disability Authority
Response to Review of Disability Allowance
Introduction
In November 2010 the Department of Social Protection published the Value for Money
Review of the Disability Allowance Payment. This review made a series of
recommendations which are now under consideration. Disability Allowance accounts
for about 100,000 of the 250,000 people receiving disability or illness–related social
welfare payments. The National Disability Authority, the independent statutory advisory
body on disability, sets out below its response to the recommendations of the review.
This paper draws on our own analysis and on the learning from a seminar on the
Review held in April 2011. At this seminar, representatives from government
departments, related agencies, people with disabilities and service providers made
suggestions in response to the Review.
Key points

The National Disability Authority (NDA) welcomes the proposals set out in the
Review of the Disability Allowance Scheme, with the important caveat that profiling
and activation should be based on functional capacity rather than medical diagnosis.

The NDA also welcomes the proposals in the Review to encourage and support
people with disabilities to obtain employment, where this is possible. NDA research
highlights the strong links between worklessness and poverty among people with
disabilities

Disability Allowance is a form of means-tested income support for people whose
capacity to earn a living is seriously restricted by their disability. Like other welfare
payments, its function is to enable people meet their everyday costs of living, like
food, clothing, and household bills.

People should be assessed for Disability Allowance in terms of their functional
capacity to work rather than their medical condition

This concept of functional capacity should underpin the proposed division of
recipients into three groups, based on closeness to the labour market

No definitive statement of incapacity to work should be made before a young
person has completed education/training. The terms and title of income support to
young adults with disabilities should reflect this approach. The starting age for such
personal income support should be 18.

Raising the starting age from 16 years would place it on a similar basis to other
payments. Young people with disabilities should be encouraged to think about
careers. Payment of DA while they are in school sends a very different signal.
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Response by National Disability Authority to Review of Disability Allowance
Transitional measures need to be in place to prepare and support people with
disabilities and their families for this change

The income and entitlements someone on Disability Allowance can get when in
work should be publicised, for example through model text for disability
newsletters; through direct contact with disability organisations and service
providers; and through developing computerised ‘ready reckoners’ which can
reliably calculate people’s entitlements and earnings

People on disability payments should be eligible to participate in mainstream job
initiatives (such as Job Bridge). Such initiatives should not be exclusively confined to
those on the Live Register

The presumption of legal capacity, to be set out in forthcoming Mental Capacity
legislation, should be the framework for guidelines on payment to an agent (family
member or service provider)

People in residential disability services who require no nursing support should not
be subject to Nursing Home Charges
Income support
Disability Allowance is a basic income support payment, to meet the ordinary cost of
living of recipients.
Costs of disability
Some, but not all, people with disabilities, face significant additional costs of living
associated with their disability. The additional costs of living are usually related to the
nature and severity of the impairment. These may be additional costs of transport, of
assistive technology, of care, or higher living expenses (special diet, laundry, extra
heating) associated with a disability.1
Recipients of Disability Allowance get secondary benefits – free travel, household
benefit package – to assist with additional costs of living, as well as normally qualifying
for a medical card.
The Review notes that a component-based Cost of Disability payment (which would
reflect the individual specific and identified needs of people with disabilities in relation to
areas such as mobility, diet, etc.) and partly work-neutral would serve to address many
of the issues, and help avoid disincentives to work. The National Disability Authority
supports the introduction of such a Cost of Disability payment.
While a Cost of Disability payment is not in prospect at this time, the NDA notes that
people on Disability Allowance with exceptional costs could in principle qualify for
discretionary payments under Supplementary Welfare Allowance scheme. This could
1
NDA 2004, Disability and the Cost of Living
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Response by National Disability Authority to Review of Disability Allowance
apply to someone with significant extra costs for special diets or for round the clock
heating, for example.
Key test is the capacity to work, not the medical condition
To be eligible for Disability Allowance a person must:

Have an injury, disease or physical or mental disability that has continued or may be
expected to continue for at least one year

As a result of this disability be substantially restricted in undertaking work that would
otherwise be suitable for a person of their age, experience and qualifications
The underlying premise of the scheme is therefore a restricted capacity to work, not,
once it is an enduring one, the type of the impairment itself. For example, someone with
spina bifida or a spinal injury will have that condition for life, however they will generally
be capable of doing office jobs or other sedentary work for which they are qualified.
The National Disability Authority therefore suggests assessment of entitlement to
Disability Allowance should be related to a person’s capacity to work rather than their
particular condition. In this regard, the use of the World Health Organisation’s ICD-10
classification, as suggested in the Review, would not be optimal, as the ICD focuses on
the type of condition or the locus of impairment, rather than on resulting restrictions in
functional capacity.2
Use International Classification of Functioning Disability and Health
A better tool for use in the medical assessment system may be the WHO’s International
Classification of Function, Disability and Health. Here are examples of relevant domains
under its Body Functions, and its Activities and Participation sections (a fuller list in is
the Appendix).
ICF Body Function domains
Mental functions
Sensory functions and pain
Voice and speech
Neuro, musculoskeletal and movement functions
ICF Activities and Participation domains
Learning and applying knowledge
General tasks and demands
Communication
Mobility
Self care
Interpersonal interactions and relationships
Profiling to be on distance from labour market/functional capacity
The National Disability Authority advises that the proposed three-way profiling of
Disability Allowance recipients be based as proposed on closeness to/distance from the
labour market, but as assessed in terms of functional capacity rather than the nature of
the disability. For example, on the basis of medical diagnosis, it could be easy to
characterise all persons with an intellectual disability as belonging to the Level 3 Group
2
Another problem with the ICD is that, in its short form, intellectual disability and mental health
conditions are joined together, although they are very different in character.
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Response by National Disability Authority to Review of Disability Allowance
Claimants who, by virtue of their medical conditions, have needs which may not be
related directly to the labour market, but which are equally important in terms of
personal development and social participation and inclusion.
The NDA advice is that the term ‘medical condition’ should be replaced by ‘functional
capacity’.
Age of payment
There are two separate but linked issues

From what age should a personal income support payment be made

At what age should a person’s capacity to work be determined
Raising young people’s expectations
As stated in the Review of Disability Allowance:
The payment of DA at age 16 carries with it the risk of creating a dependency on
social welfare at a very young age and can generate disincentives to taking up
education, training or employment opportunities
It is important to move away from the culture of low expectations of people with
disabilities, to an expectation that people with disabilities have a capacity to participate
in further education and to obtain employment. A recent validation exercise by the HSE,
carried out as part of the review of adult day services, confirmed that many people in
day programmes, with significant disabilities, are working in real jobs. This illustrates that
holding a job is a realistic aspiration.
The NDA accepts the arguments made in the Review for raising the minimum age of
payment to 18, in line with the minimum age for other welfare payments. No other
school students receive a weekly welfare payment while still at school.
A cross-cutting approach to raising expectations
Building positive expectations involves more than changing the age at which a student’s
income support begins. Getting early assessment and intervention, and the right therapy
and education supports, play a big role in maximising the potential of a young person
with disabilities. Schools also play a major role in relation to expectations around
independence and a future in work.
A school’s programme, on the lines of the UK’s Getting a Life project, could help
students with disabilities to actively plan for future education and a career from the time
they begin at 2nd level. The UK’s Valuing Employment Now strategy sets out a
cross-cutting programme aimed at raising expectations of employability. 3
3
UK Department of Health (2009) Valuing Employment Now Chapter 1
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_101454.pdf
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Response by National Disability Authority to Review of Disability Allowance
Planning the transition from payment at age 16
It is important to carefully plan and manage any transition, in a way that protects
families, and that balances parental expectations of income support at age 16, with
building a change in expectations around work and participation opportunities. Early
engagement with disability representative organisations and parent groups would be
important, alongside a suitable lead-in time.
Raise Domiciliary Care Allowance for 16-18 year olds
The scale of potential cash loss to families, even with a proposed extension of
Domiciliary Care Allowance to age 18, was a major factor in the public reaction to the
previous attempt in 2009 to raise the age to 18. As a main reason to make the change is
about promotion of career aspirations, it may be useful to consider a higher rate of
Domiciliary Care Allowance for age 16-18 year olds as a transition measure, bridging
some of the gap between payment of the current Domiciliary care Allowance Rate and
of the full Disability Allowance rate.
How soon is work capacity determined
As set out in is submission to the Review, the NDA advises that it is not appropriate to
determine in an official way a person’s long-term capacity to work, at a time when they
have not completed their education or training, and their capacities have not been fully
developed.
The NDA suggests that Disability Allowance be repackaged as a
Development/Education Allowance for these young people (e.g. up to age 22). A
key aspect would be a built in 'plan/ package' whereby a set of steps are made with the
family and the young person, including education, training and work experience, to
support them towards employment. The NDA suggests that this approach might be
piloted with a number of voluntary agencies, and across a mix of young people with
physical, sensory, intellectual and mental health disabilities (including progressive
disabilities).
For example in the Netherlands, young people at 18 can receive a form of disability
allowance called the Wajong. This benefit has a form of conditionality attached:
recipients must be attending further education and training and/or be seeking/in some
form of employment in order to receive these benefits4.
4
National Disability Authority (2011) Health and Personal Social Services for People with Disabilities in
The Netherlands A Contemporary Developments in Disability Services Paper.
http://www.nda.ie/Website/NDA/CntMgmtNew.nsf/0/97139B74DAE88BA38025787700527CA7/$File/Net
herlands.pdf
Organisation for Economic Co-operation and Development (2008) Sickness, Disability and Work.
Breaking the Barriers. Denmark, Finland, Ireland and the Netherlands. Vol.3
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Response by National Disability Authority to Review of Disability Allowance
Care needs v. capacity to work
There is a distinction between having a condition which requires higher inputs of
parental care, and one’s capacity to work. Although many of the people whose parents
qualify for a Domiciliary Care Allowance may also meet the eligibility criteria for
Disability Allowance, transition from one to the other should not be automatic.
Letting people know about income in employment
The National Disability Authority acknowledges the importance of enabling people to
see Disability Allowance not just as a destination, but as a stepping stone to
employment. A central element of the the UK’s Valuing Employment Now strategy
is the provision of good information and advice to show people with disabilities that
work pays.5
The National Disability Authority supports the recommendation of the Review that the
arrangements for tapered retention of Disability Allowance should be widely publicised.
The NDA suggests that the Department develop model text for inclusion in the
newsletters of disability and mental health organisations, which might be disseminated
via the relevant umbrella organisations, and that in addition individual disability service
providers be written to with this information.
For people with mental health difficulties, work is a central part of recovery. So it is
particularly important that they would be made aware of the opportunities to work
while drawing Disability Allowance, and of their financial situation if they get regular
work and move off the Allowance.
The NDA also suggests that the Department, in conjunction with the Citizens
Information Board, develop a computerised ‘ready reckoner’ which could reliably set
out for individuals what net income and other entitlements they would continue to
receive at different levels of earnings.
Eligibility for mainstream job schemes
Cabinet procedures require disability-proofing or a disability impact assessment to be
conducted of any significant measure going before Government, In line with that
principle, the NDA advises that any job initiatives (e.g. schemes like Job Bridge) should
be open to people on Disability Allowance or other disability payments, and not
exclusively confined to those on the Live Register.
People in residential care
About 10,000 people with disabilities, primarily people with intellectual disabilities live in
residential care, mainly in group homes or in residential centres. Most of those under
5
UK Department of Health (2009) Valuing Employment now – real jobs for people with learning
disabilities – Chapter 6
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_10140
1
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Response by National Disability Authority to Review of Disability Allowance
pension age would rely on Disability Allowance as their main source of income. In the
past, people living in residential care did not receive an income in their own right, just a
pocket-money allowance, but that changed when entitlement to Disability Allowance
was extended to all qualified persons, irrespective of their residential circumstances.
Having an income of one’s own can give people greater autonomy and control over
their lives, allowing them choose what they eat and wear, and how they spend.
However, the reality can be different for those who live in a care facility.
Nursing home charges
People who live in residential disability centres come under the Nursing Home
regulations and can be charged 80% of their income towards their care. Unlike for most
people in nursing homes, such charges do not just apply for a finite period at the end of
someone’s life, but may cover a large part of someone’s adult life.
Many of those living in residential care or in group homes do not have medical
conditions requiring on-site nursing. However, for historical reasons, there is a large
complement of nursing staff (c 4.500) in intellectual disability services. So people in
residential care with no particular medical needs, and who could and should be able to
use their Disability Allowance to buy their own food, clothes, and pay their share of
household bills in an autonomous way, may be left with just a pocket-money allowance if
there are nursing staff attached to their home. The thrust of public policy, in line with
Articles 12 and 19 of the UN Convention on the Rights of Persons with Disabilities, is
moving towards promoting greater autonomy, independence and living a regular life in
the community.
There is also an issue of equity of treatment between people who live in a nurse-staffed
service, and those who don’t.
Some residential services depend significantly on income from resident charges towards
funding their services. In some other services, the practice is for service providers to
pay for food, bills and household expenses for residents, with the Disability Allowance
available in full for an individual’s discretionary spending, or to pay for community-based
activities.
Guidance as to charging
The NDA advises that the Department of Social Protection, the Department of Health
and the HSE should set up a working party to review this issue, and to consider
amendment of the Nursing Home Charge regulations as they apply to this group. The
financial implications to the HSE disability service of any change would also need to be
factored in to such discussions.
There are also differences between services in how communal expenses in a group living
arrangement are met. This is an area where uniform guidance to service providers
would be welcome, to
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Response by National Disability Authority to Review of Disability Allowance

Maximise the degree to which service users provide autonomously for their own
daily living needs by buying their own food, clothes, and making their contribution to
shared living expenses.

Determine an agreed basis for contributions from a person’s welfare payment
towards services bought in common
Payment to agents
The NDA welcomes the proposals in the Review to issue new Guidelines on agency
arrangements that address many of the concerns raised. The NDA also underlines the
importance of having adequate systems to protect against financial abuse of persons with
disabilities, whether by a family member or a service provider acting as an agent.
When an adult’s Disability Allowance is collected by other family members, there is the
risk it is seen as part of the family or parental income, and that those other family
members may be reluctant to risk the loss of that income should the person with a
disability take up employment.
The forthcoming Mental Capacity legislation will set a presumption of legal capacity to
make decisions, and will set out the circumstances in which a legal guardian may be
appointed to assist in relation to particular kinds of decisions. This has implications for
the current agency arrangements in place. There may be a role for the proposed Office
of the Public Guardian to be set up under this legislation in having oversight of agency
arrangements or supported or substitute decisions around how someone’s income is
spent.
This legislation is being prepared to allow Ireland to comply with Article 12 of the UN
Convention on the Rights of People with disabilities, to which Ireland is a signatory.
In terms of current Type 1 Agents, where a payment is collected on a person’s behalf,
the NDA suggests that the widespread introduction of electronic banking arrangements
facilitates the replacement of this system with an arrangement whereby payments can be
made electronically into the individual’s bank account.
The current arrangements for Type 2 Agents involve the certification by a registered
medical practitioner that a person is unable to manage their own affairs. The
presumption of legal capacity would require a change in that kind of determination. In
particular, the current requirement that a person should understand the eligibility rules
has little bearing on a person’s capacity to manage their own money, either
independently or with support.
A presumption of capacity may see an expansion in supported decision-making in
relation to how individuals control and manage their money.
Supporting Disability Allowance recipients to have autonomy over how their allowance
is spent is an important step in progressing their independence. The NDA advises the
Department of Social Protection that there are some gradual measures that need to be
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Response by National Disability Authority to Review of Disability Allowance
put in place to assist and prepare people with disabilities, their support network and
service providers to manage their Disability Allowance:

People with disabilities need to receive training in how to manage their money and
their own bank accounts, including electronic banking

People with reduced capacities should be able to access some form of transparent,
tightly supervised supports that will enable them to manage their money

Personal advocacy services can protect people on disability and other benefits
against financial abuse

Disability Allowance recipients in residential care should be encouraged and
supported by service providers to have more autonomy over how their DA is spent.

Supporting DA recipients to have autonomy over their payments required a interdepartmental approach
The NDA acknowledges that supporting recipients of Disability Allowance to have
autonomy in how they manage their payments is not the sole responsibility of the
Department of Social Protection. This process requires a multi-agency approach to
ensure that streamlined support services are provided to people with disabilities.
Personal Budgets
The Programme for Government proposes that part of the funding to disability services
be converted into Personal Budgets. Such Personal Budgets would give people with
disabilities autonomy and choice over the monies spent on services to them. In recent
years, much of the funding for care support in England has been transformed into
Personal Budgets.6
While initially such Personal Budgets may be determined and paid via the HSE, as such
Personal Budget systems become established, there may be a role for the Department
of Social Protection in the administration of these funds. Staff in the Department of
Social Protection and service users will require appropriate training in the effective
delivery, monitoring and use of personal budgets7
Partial Capacity Scheme
The Value for Money Review of the Disability Allowance refers to the Department’s
plans to introduce a Partial Capacity Scheme. The objective of this Scheme is to provide
people on Illness Benefit and Invalidity Pension for more than 6 months with the option
to obtain part-time work without their benefits being affected. Participation is voluntary
and people will undergo a partial capacity assessment to determine their suitability to
6
NDA (2011) Health and Personal Social Services for People with Disabilities in England
A Contemporary Developments in Disability Services Paper, page 11.
http://www.nda.ie/Website/NDA/CntMgmtNew.nsf/0/F09C6B00AAD4B8A78025787700527B79/$File/Engl
and.pdf
7
ibid
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Response by National Disability Authority to Review of Disability Allowance
work part-time. The Partial Capacity Scheme is a long term Scheme that the
Department hopes to roll out at end of 2011.
The NDA welcomes the introduction and implementation of this Scheme. We suggest
that some of the learning from the roll out and operation of this Scheme could inform
the development of activation and progression for people on Disability Allowance, and
the review of arrangements relating to ‘rehabilitative employment’.
The NDA advises that the Department of Social Protection should promote the Partial
Capacity Scheme through their regional and local offices, via FÁS, members of the
Disability Consultative Forum, disability organisations, family doctors, occupational
health specialists, employer bodies and networks of Human Resources managers.
Conclusion
The National Disability Authority welcomes the proposals set out in the Review of the
Disability Allowance Scheme, with the important caveat that functional capacity rather
than medical diagnosis should inform decisions under the scheme.
The NDA is available to elaborate further on any of the points in this paper if so
required.
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Response by National Disability Authority to Review of Disability Allowance
Appendix
International Classification of Functioning Disability and Health
Body functions – short list
b1. MENTAL FUNCTIONS
b110 Consciousness
b114 Orientation (time, place, person)
b117 Intellectual ( incl. Retardation, dementia)
b130 Energy and drive functions
b134 Sleep
b140 Attention
b144 Memory
b152 Emotional functions
b156 Perceptual functions
b164 Higher level cognitive functions
b167 Language
b2. SENSORY FUNCTIONS AND PAIN
b210 Seeing
b230 Hearing
b235 Vestibular (incl. Balance functions)
b280 Pain
b3. VOICE AND SPEECH FUNCTIONS
b310 Voice
b4. FUNCTIONS OF THE CARDIOVASCULAR, HAEMATOLOGICAL,
IMMUNOLOGICAL AND RESPIRATORY SYSTEMS
b410 Heart
b420 Blood pressure
b430 Haematological (blood)
b435 Immunological (allergies, hypersensitivity)
b440 Respiration (breathing)
b5. FUNCTIONS OF THE DIGESTIVE, METABOLIC AND ENDOCRINE SYSTEMS
b515 Digestive
b525 Defecation
b530 Weight maintenance
b555 Endocrine glands (hormonal changes)
b6. GENITOURINARY AND REPRODUCTIVE FUNCTIONS
b620 Urination functions
b640 Sexual functions
b7. NEUROMUSCULOSKELETAL AND MOVEMENT RELATED FUNCTIONS
b710 Mobility of joint
b730 Muscle power
b735 Muscle tone
b765 Involuntary movements
b8. FUNCTIONS OF THE SKIN AND RELATED STRUCTURES
ANY OTHER BODY FUNCTIONS
Activities and Participation – short list
D1. Learning And Applying Knowledge
D110 Watching
D115 Listening
D140 Learning To Read
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Response by National Disability Authority to Review of Disability Allowance
D145 Learning To Write
D150 Learning To Calculate (Arithmetic)
D175 Solving Problems
D2. General Tasks And Demands
D210 Undertaking A Single Task
D220 Undertaking Multiple Tasks
D3. Communication
D310 Communicating With -- Receiving -- Spoken Messages
D315 Communicating With -- Receiving -- Non-Verbal Messages
D330 Speaking
D335 Producing Non-Verbal Messages
D350 Conversation
D4. Mobility
D430 Lifting and Carrying Objects
D440 Fine Hand Use (Picking Up, Grasping)
D450 Walking
D465 Moving Around Using Equipment (Wheelchair, Skates, Etc.)
D470 Using Transportation (Car, Bus, Train, Plane, Etc.)
D475 Driving (Riding Bicycle And Motorbike, Driving Car, Etc.)
D5. Self Care
D510 Washing Oneself (Bathing, Drying, Washing Hands, Etc)
D520 Caring For Body Parts (Brushing Teeth, Shaving, Grooming, Etc.)
D530 Toileting
D540 Dressing
D550 Eating
D560 Drinking
D570 Looking after one`s Health
D6. Domestic Life
D620 Acquisition of Goods And Services (Shopping, Etc.)
D630 Preparation of Meals (Cooking Etc.)
D640 Doing Housework (Cleaning House, Washing Dishes Laundry, Ironing, Etc.)
D660 Assisting Others
D7. Interpersonal Interactions And Relationships
D710 Basic Interpersonal Interactions
D720 Complex Interpersonal Interactions
D730 Relating with Strangers
D740 Formal Relationships
D750 Informal Social Relationships
D760 Family Relationships
D770 Intimate Relationships
D8. Major Life Areas
D810 Informal Education
D820 School Education
D830 Higher Education
D850 Remunerative Employment
D860 Basic Economic Transactions
D870 Economic Self-Sufficiency
D9. Community, Social And Civic Life
D910 Community Life
D920 Recreation and Leisure
D930 Religion and Spirituality
D940 Human Rights
D950 Political Life and Citizenship
Any Other Activity And Participation
12