A SOUTH FLORIDAREGIONAL

DISABILITY RESOURCE CENTER

Presented by

Michele Williams, Education Consultant

(305) 259-7777

(305) 282-0407 (cell)

SUCCESS AT LIVING WITH DISABILITIES TODAY

• IS PURE LUCK. . .

BECAUSE THERE IS NO COMPREHENSIVE SOURCE OF

INFORMATION

• Every professional knows only his specialty—cross referrals are rare

• Funding is scarce, hoarded for the worst—but run by bottom-line, not need

• Lack of information means living from crisis to crisis, never being prepared

• Mental health professions deal primarily with state of crisis

We need INFORMATION!

• TO ADAPT TO ACQUIRED DISABILITY• TO PARENT CHILDREN WITH DISABILITY• TO EDUCATE CHILDREN WITH DISABILITY• TO FINANCE LIFE WITH DISABILITY• TO MAINTAIN GOOD MENTAL HEALTH• TO LIVE PRO-ACTIVE, PRODUCTIVE LIVES• TO LIVE WITH DIGNITY

Evaluation

Dissem-ination

Commu-nity Net-

working

Respite

Insurance

Financial Housing

Education Advocacy Training

Agency Referrals

Parent & Family

Trainings

AssistiveTechnology

Therapies

Medical Referrals

PERSON

We need a one-stop place to begin under-standing our needs and resources.

Permits Direction

Determines Referrals

Key to Services & Success

Evaluation

Evaluation is the key to everything—knowing self, what our possibilities might be, what our options are, where resources are, who is truly knowledgeable and can help us.

Accurate evaluation permits successful treatment and identity development, determines what referrals should be made, and allows us to have direction in our lives.

Stop/SlowDecline

Highest Functioning

Appropriate Treatment

Medical Referrals

Proper medical referrals allow us to have appropriate treatment. Proper treatment permits us to retain or achieve our highest functioning and may slow or stop decline.

IncreasesIndependence &

Employability

Improves Communication

Restores or Improves

Functioning

Assistive Technology

Assistive Technology is the new frontier in disability treatment and services. With assistive technology, personal physical skill differences are minimized.

The effects of learning disabilities are diminished as a person learns alternative ways to read, write, compose, learn, test. Physical differences are less restrictive when technology can empower someone to do the things everyone else can do.

Most dramatic is how technology allows communication. Communication unlocks the intellect and personality, and as Steven Hawking has shown us, the differences do not have to define our entire.

But who teaches us how to use this technology, and where do weget it? If we know where it is,how can we pay for it?

ImprovesEmploy-

ability

ImprovesLearning

Maintains or Improves Function

Therapies

Therapies currently are viewed as optional if you can afford them. Only people who can afford it ever get what they need.

Physical and occupational therapy maintain or improve functions. In students, it often improves learning by steadying unstable bodies, permitting motion when required, minimizing distracting involuntary motions, keeping better learning postures, etc. Behavioral therapy teaches socially-accepted behaviors, behaviors that permit learning.

From childhood forward, better function improves employability.

Safety for Individuals

Healthy Family

Dynamics

Maximum Help &

Understanding

Parent & Family

Trainings

Parents and families need training to understand the impact of disability on the child, the family, and family dynamics. Lack of understanding leads to frustration and striking out, sometimes jeopardizing the health and safety of the individual with a disability.

Knowledge of the disability, resources, and appropriate treatments allows families to support the person and each other.

Know Options If Refused

Know Who & How To

Ask

Know What Is Needed

Education Advocacy Training

Parents need to know what their child’s learning needs are—and school staff often don’t know. Education research is mostly for K-12 students, but not generally disseminated thoroughly.Parents need to know who and how to ask for the services their child requires to learn, and when those services are denied, they need to know their legal and community options.

We are not taught the advocacy skills this requires. We are not taught special education law or school procedures. There is much to know about how to assure appropriate education for children with disabilities.

Adult students need to know how to advocate for themselves and how/where to exercise legal options if necessary.

There is far less research into post-secondary alternative learning strategies/methods.

Maximize Resources

Community Awareness

Community of Help

Agency Referrals

Agencies are a mainstay in services for people with disabilities. A one-stop place would give the information up front, eliminating the life-long search that often does not find enough support.

Not only is there the moral support benefit of knowing our resources, but once we know of these services, our use of them encourages development of more.

In this way, knowledge and use of agency services “grows” and maximizes services.

Professional Re-Learning

Individuals

Parents Need Help

Mental Health

When a diagnosis is given, parents and the individual with disability need mental health support. The differences of disa-bility are daunting and depression is common.

For lack of diagnosis, many individuals attempt self-medication through alcohol and substance abuse. Even with diagnosis, negative attitudes about chronic medications require counseling and support during transition.

Insurance is often inadequate for the cost of many medications or counseling, leading to lack of treatment and more depression and/or substance abuse.

Counseling should impart thorough knowledge of the disability and management strategies so indivi-duals and families can avoid problems and are not forced to live from crisis to crisis. Current treatment methods do not include pro-active disability managementtraining for the family or person living with a constant potential for disaster.

Financing a Home

Locate or Adapt

Homes

Know Needs & Indepen-

dence Level

Housing

When physical disability enters a home, some people can move, some cannot. Some can adapt the home, some cannot. Adapting a home for physical disabilities requires a know-ledge of the individual’s needs and level of independence.

Adapting a home or buying one involves costs not everyone can afford. There are resources, but these are “hidden” and not easily found. Where does one go for the 1% loan rate to which many people with disabilities can get? Where are grants for adapting a home for disability access?

Currently NO ONE is teaching this.

Finance Plan

SSI/SSDI? Job?

Finance For Today,

Lifetime

Financial

Financing disability is almost impossible. Services and medications are costly, social security is not a livable income, and the cost of insurance for disability is astronomical. For individuals who require 24/7 care or institutionalization, poverty is virtually guaranteed, not just for the individual, but for the family as well.

For the individual who can never become independent and require lifetime care, how can parents provide after they die? There are ways, but many people never find them.Who are the people or companies able to set up special needs trusts and family estates to care for that person?

If one can be independent, should he take a job thatwill cost him his SSI or SSDI and therefore lose Medicaid?

What’s THE PLAN?

Builds Our Economy

Pays Taxes

Reduces Depen-dence

Employ-ment

Unemployment among individuals with disability is over 50%. The majority of this population can work and wants to be economically independent.

Living wage for work allows individuals to provide for their own care, medications, activities, home, transportation. The worker pays taxes rather than depend upon social largesse.

Employment of individuals with disabilities improves the economy in many ways, provides a stable, loyal wprk force, and permits society to access the skills, abilities, and full potential of each employee.

Social misperceptions and mythsabout disability abound, and howdoes an individual with disabilitycombat that?

We must ready people withdisabilities AND employers for inclusion of people with disabilities In the workforce.

Insurance Options

What Does DX

Require?

Medicaid/Medipass,Private?

Insurance

Insurance is a lifeline reserved for those with $$. Private insurance never covers enough for chronic mental health or therapy needs. Services under Medicaid, Medipass, and Medicare are limited and often insufficient, slow in coming, or unobtainable.

There are combinations of public/private insurance that may help. Various policy types may help, especially those related to long-term financial planning.

But if sales representatives with self-interest are the only ones teaching it, can we guarantee they’re teaching without bias?

Fosters Good

Mental Health

Must HaveRest &

Renewal

CaregiversHave Own

Lives

Respite

Imagine that you are the caregiver for an individual whose sleep pattern is irregular, needs little sleep, needs constant attention when awake. You cannot work, you cannot go shopping, you cannot go for your own medical care, you risk danger if you go to the bathroom at the wrong time, and you need more sleep. How long can you go on?

Caregivers need time to rest, do things for themselves, renew their depleted spirits. Mental health suffers in the face of deprivations that care-giving without respite demands.

DevelopsResources

More Alternatives

Support Groups

Community Net

Working

Support groups are sources of information, assistance, and mental health support among people with similar needs.

Together members of support groups often develop solutions to common problems, solve dilemmas, develop resources among themselves.

The community network is sometimes informal and not well-known and may be accessible only to those who are aware of it. Currently no comprehensive mechanism exists for these groups to achieve public awareness or for individuals who need them to seek them out.

IncreasesResources

Assist With Replication

Public Awareness

Creates Demand

Dissemi-nation

If we can create a one-stop disability resource center that serves South Florida, we will want to publicize it. If it empowers people and families dealing with disabilities to become more functional, more independent, better able to access the help and services they need, it will be in demand. Demand will create greater public awareness.

Because it works, saving public dollars, serving in early intervention instead of more costly services later, other areas will want to know how we did it. Even if others only want to replicate a portion of what this Center can become, replication will benefit those whom it serves.

Again, demand increases theresources we have for dealingwith the needs and issues ofdisability.

Publications and conferences about problem-solving for and living with disability issues can be both service and income options.

A South Florida Regional Disability Resource Center

Could Provide:• One-stop disability information and referrals

• Options for knowledgeable planning

• Tracking mechanism for providing timely information as medical conditions progress and for to parents and caregivers as children grow.

• An essential collaboration among professions to improve collective success

• Early intervention and complete training for best outcomes

• One-of-a-kind opportunity for evaluation of early intervention success, even for adults’ acquired disability

• Opportunity to determine financial/social benefits of consistent early intervention and complete training of individuals, caregivers and treating professionals

Fund this Center and Its Services for 15 years

• And studies of fully-funded early intervention and training will likely show– Reduced dependence on special education– Reduced need for mental health services – Reduced need for substance abuse centers– Reduced need for jail space– Reduced need for homeless beds/shelters– Reduced expenditures for SSI/SSDI– Reduced unemployment for people with disabilities

AND

• WE WILL HAVE BUILT THE CASE FOR A FEDERALLY-FUNDED PROGRAM THAT TREATS DISABILITY APPROPRIATELY

OR

• WE WILL HAVE THE INFORMATION THE INSURANCE INDUSTRY NEEDS TO JUSTIFY COVERING EARLY INTERVENTION AND DISABILITY MANAGEMENT TRAINING COSTS FOR FAMILIES AND INDIVIDUALS LIVING WITH DISABILITY

WHERE/HOW?

• House the South Florida Disability Resource Center on or near a campus with connections to a medical school.

• Situated on or near a campus with schools of medicine, law, social work, education, rehabilitation counseling, psychology, nursing, and business, this center could provide much more than community services.

Research Resource

• Such a Center could be a locus of research in early intervention and treatment methods for disabilities, counseling, mental health, education, employment, and family life.

• Best Practices could be developed and disseminated from here.

• Students would have easy access to choose research careers.

• In Miami, it can serve 7 colleges and universities.(University of Miami, Florida International University, Florida Memorial University, Barry University, St. Thomas University, Miami -Dade College, and Carlos Albizu University)

• Regionally, it can serve many more people and facilities.

TRAINING FOR SUCCESS

• Students: Some staff could be student internship opportunities, cost-saving in operating costs and allowing superior training for students. Students who learn this approach to disability treatment will spread it wherever they go.

• Professionals: The more people are trained to treat disabilities early, comprehensively, and collaboratively, the less “turfism” and the greater the independence of people with disabilities.

• Contribute to a new career field: This Center could provide another site for a degree or certification such as Disability Studies or Disability Administration with courses drawn from business, medicine, therapy, sociology, psychology, education, etc.

$UPPORT

• Federal Grants• State Grants• Local Grants• Corporate Support• Private Philanthropy• Agencies such as Children’s Trust, Human

Services Coalition, United Way

IN ANY CASE

• The South Florida Regional Disability Resource Center has the potential to model change in treating disability and the surrounding social issues

• And justify our belief in the potential of all individuals with disabilities.