Tag Archives: Independent Living Centers

am i ready for a wheelchair van

am i ready for a wheelchair van

2013 Honda Wheelchair Van Massachusetts


“I’m Not Ready…”
People offer many reasons for staying away from modified vans:
“What I drive is a reflection of my personality. A seven foot high van isn’t who I am.”
“Meeting the challenge of transferring to my car and hauling my chair in behind me makes me feel good about myself.”
“I simply don’t have money for a lift and all the modifications I’d have to do to a van.”

 

Mostly what keeps people in their cars is the I’m Not Ready Syndrome:

  • I’m not ready to give up the fun car.
  • I’m not ready to give up the challenge.
  • I’m not ready to spend the money.

Eventually, two or three primary factors ­ preserving function, maximizing options and flexibility, looking into the future in order to plan for and anticipate change ­ drive the decision and help clarify the choices.

Despite all the good, logical reasons for continuing to drive those cars, many find it difficult to deny nagging shoulder pain, decreased tolerance for the hassles of car transfers and chair loading, or the simple fact that they don’t have the energy they once did. Making a change is a dilemma many survivors confront each day.

 

Reason #1: The Shoulders
The first consideration mentioned by many in the rehabilitation field for making the change from car to van is maintaining and preserving physical function. Research with those injured more than 20 years indicates that the biggest predictor of pain and fatigue two things that can get in the way of function ­ was having experienced pain and fatigue three years earlier. Not making changes when problems first arise is an almost sure way of having them get worse.

The pain and fatigue can come from the distance of the transfer, since getting as close to the car seat as to a bed is difficult. Another consideration is the height of the transfer. Having to lift up or down in the process of doing a transfer adds considerable extra stress to shoulders. Also muscling the chair itself in and out of the car can cause more pain and do damage. And, just the sheer number of transfers continues to accumulateover time. What results from all this is usually joint pain ­ from the neck all the way down to the wrist ­ often arthritic in nature, and often accompanied by tendinitis. The joint pain, the arthritis, the tendinitis are the body’s way of saying that what you’re doing isn’t working very well and is causing some harm.

Researchers have also linked fatigue to future problems, including depression, lower quality of life and, in some survivors, the need for both more durable medical equipment and help from others. As car transfers and chair loading become more difficult, many people report curtailing activities in order to avoid the transfers. Too often therapists encounter aging clients who are giving up things they enjoy – fishing, traveling, even working – because of pain and fatigue. Still, even though people find themselves giving up activities, they resist making the changes necessary to avoid the hassles, the pain, the fatigue. For many it comes down to wanting to fight off the realities of aging with a disability for as long as possible. The arguments are predictable, in part, because they’re so valid: like we said before, big vans are inconvenient and hard to drive, they cost too much, people like the physical challenge of doing transfers. Often it’s an image thing.

 

Reason #2: Image
A vehicle is often an extension of one’s personality. Giving up part of our personality ­ rugged or adventurous individual; sporty, fun kind of guy; or sedate, respectable, suburban family person ­ isn’t easy. Most everyone who buys a vehicle gives some thought to image. Not everyone feels comfortable driving a big van: they can be too big, not sporty enough or they simply don’t fit our self image. While minivans are an option for some individuals, many ­ especially big people who use big chairs ­ find minivans too small for the lift they need and too tight inside for the necessary maneuverability.

Regaining independence following injury and rehab was for many the single most significant achievement of post-paralysis life. Giving up the car may be viewed as giving up ­ not only by the survivor but also by those around him. Yet, making the changes and using the lift may be necessary to maintain that highly prized independence: Isn’t getting there far more important than just exactly how it’s done?

 

Reason #3: Somebody Else
Decisions about what to drive affect more than just the survivor, especially if someone else is doing the chair loading. A change to a van with a lift could be necessary even if your back or shoulders are just fine. Wives, husbands and caregivers age too, and they are often called on to help with many transfers, chores and tasks requiring heavy or awkward lifting. Survivors need to be not only aware but also sensitive to their needs.

Reason #4: $$$$$
A switch to a modified van can add $15,000 to $30,000 or more to the cost of a vehicle. Insurance and fuel costs usually go up, and some modified vans ­ even ones without raised roofs ­ won’t fit in standard garages and may require modified garage arrangements as well. Yet there are costs involved in becoming less active, not going out as much and staying home more. Active people tend to be healthier, happier and less depressed. Going too long on deteriorating shoulders can leave people even more dependent, eventually making hired help more necessary.

People ­ even some who are unemployed and on Medicaid ­ buy vans and somehow find ways to pay for them. Worker’s Compensation, Medicaid Waivers, Vocational Rehabilitation and the VA are all government programs which may help with funding. Charitable organizations such as Easter Seals are a possibility. Fraternal organizations may provide help. Some banks issue extended loans and Independent Living Centers may offer low interest loans.

Lower cost home equity loans may also be an option. There are always fund raisers ­ through church, civic or community organizations. And used equipment, or used modified vans are also possibilities. We tend to figure out necessities.

 

Thinking Ahead
Sound decisions which will provide flexibility for five to eight years need to be based on a realistic assessment of present function and trends in your strength, stamina, life-style, pain and function. Is it practical to stick with a car if strength has been decreasing and pain has been increasing for the past three years? Transfers may not be much of a problem now, but is it realistic to expect they’ll still be as easy in 5 years, when you’re 56? Can you afford not to change?

More often than not, the decision to switch from a car to a van is one of many decisions which contribute to the lifelong process of adaptation to disability. Adaptive equipment helps narrow the gap between aspiration and ability, between wants and needs, and allows us to do so comfortably and safely. Adaptive equipment can help avoid pain, preserve energy and prevent future problems. New equipment can preserve time and energy and help enhance as well as maintain both independence and quality of life.

Quality of life may be the prime consideration for switching from car to van. The switch is a matter of preventative maintenance ­ a change which may allow us to keep the function we have and maintain the quality of life we desire. How we regard these changes can be as important as the changes themselves.

 

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Disability Agencies in Massachusetts

Massachusetts Office on Disability (MOD)

MA State Seal - Handicapped Wheelchair Vans

Description:

The Massachusetts Office on Disability (MOD) is the state advocacy agency for people with disabilities. MOD’s goal is to make sure that people with disabilities have the legal rights, opportunities, support services, and accommodations they need to take part in all aspects of life in Massachusetts. MOD helps people of all ages.

One of MOD’s main duties is to make sure that the state government, the local governments, and private organizations comply with the Americans with Disabilities Act. MOD informs residents about their rights under the law, investigates complaints, and works to correct any violations. MOD services are free.

Services:

The Massachusetts Office of Disability has three main programs:

  • The Government Services Program provides technical assistance and advice to state and local governments on all disability-related issues. MOD makes sure that government regulations and policies meet the requirements of the Americans with Disabilities Act. MOD offers guidance to public service agencies and makes public policy recommendations on behalf of residents with disabilities.
  • The Client Services Program helps individuals who need help with disability-related problems. MOD operates an information and referral system to help residents find the services they need and learn about their legal rights. MOD also investigates complaints and helps correct civil rights violations. MOD’s Client Assistance Program (CAP) helps residents who are having problems with federally funded vocational rehabilitation and independent living programs.
  • The Community Services Program helps communities become more responsive to the needs of residents with disabilities. MOD trains individuals and community organizations to advocate for the rights of the disabled. MOD offers technical assistance and information about accessibility laws. The goal is to improve access to public and private places, programs, and services for people with all types of disabilities.

Contact Information:

  • Massachusetts Office on Disability
    One Ashburton Place, Room 1305
    Boston, MA 02108Telephone: 617-727-7440
    Toll-free: Voice/TTY: 800-322-2020
    Fax: 617-727-0965
    Web site: Massachusetts Office on Disability (MOD)


Massachusetts Rehabilitation Commission (MRC)

Hand Controls, wheelchair vans and Adaptive Equipment Dealer Massachusetts

Description:

The Massachusetts Rehabilitation Commission (MRC) helps people with disabilities find employment and live independently. The MRC serves Massachusetts residents age 18 and older. The MRC helps people with all types of disabilities except blindness. Legally blind residents can get services from the Massachusetts Commission for the Blind.

Services:

The MRC is the state agency in Massachusetts responsible for Vocational Rehabilitation (VR), Community Services (CS), and Disability Determination Services (DDS). The MRC also assists with public benefit programs, housing, transportation, and consumer issues. Some MRC programs and services have specific eligibility requirements. Most are free.

  • The Vocational Rehabilitation (VR) Program helps people with disabilities find work or go back to work. The VR program works with various organizations in the community to help create jobs for Massachusetts residents with disabilities.
  • The Office of Community Services (CS) offers a variety of services to help people with disabilities live independently in their communities:
    • The Brain Injury and Statewide Specialized Community Services (BISSCS) program helps Massachusetts residents who have externally caused traumatic brain injuries.
    • Protective Services tries to prevent the physical, emotional, or sexual abuse of people with disabilities by their caregivers.
    • Independent Living Centers provide advocacy, personal care management, and independent living skills training.
    • The T22 (Turning 22) Independent Living Support Program helps young people with physical mobility disabilities who want to live independently in their communities.
    • The Home Care Assistance Program for disabled adults under age 60 provides help with homemaking tasks (see Home Care Assistance Program).
    • Other in-home and community living support services are also available.
    • The Assistive Technology (AT) Program buys and installs assistive devices and provides training and follow-up for users.
  • Disability Determination Services (DDS), funded by the Social Security Administration (SSA), determines medical eligibility for Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) benefits. Disability examiners use medical and vocational information to make their decisions.

MassMATCH:

Web site: MassMATCH

MassMATCH is a statewide program to help Massachusetts residents with disabilities find, pay for, and use assistive technology (AT) that can make a difference in their lives. The MassMatch web site offers information and advice about:

MassMATCH (Maximize Assistive Technology in Consumers’ Hands) is a partnership between the Massachusetts Rehabilitation Commission, other state human services agencies, and community-based organizations.

Contact Information:


Massachusetts Commission for the Blind (MCB)

Description:

The Massachusetts Commission for the Blind (MCB) provides rehabilitation and social services to legally blind Massachusetts residents of all ages. These services help people who are legally blind live independently as active members of their communities. The MCB contacts all legally blind people in the state to offer support services.

Eye care providers in Massachusetts are required by law to report all cases of legal blindness to the MCB. The MCB keeps a confidential registry of all legally blind people in the state. The Commission issues Certificates of Legal Blindness to people on its register. These certificates allow legally blind residents to get exemptions and deductions on income tax, property tax, and auto excise tax. The Commission also issues an identification card, similar to a driver’s license, for personal identification and proof of legal blindness.

Services:

The Massachusetts Commission for the Blind provides the following services:

  • Vocational Rehabilitation (VR), including diagnostic studies, counseling and guidance, individual plans for employment (IPE), restorative and training services, rehabilitation and mobility instruction, assistive technology, adaptive housing, job placement, and post-employment services
  • Assistive technology
  • Independent living social services, including homemaking assistance, assistive devices, mobility instruction, and peer support groups
  • Specialized services for blind seniors (BRIDGE program)
  • Specialized services for blind children, including referrals for early intervention, public benefits, respite care, and socialization and recreation programs
  • Specialized services for blind/deaf individuals and others with multiple disabilities
  • Rehabilitation instruction, including Braille and typing, use of low-vision devices, labeling and recordkeeping, food preparation, home safety, and self-care techniques
  • Orientation and mobility instruction, including guide dogs
  • MassHealth services for financially eligible people who are legally blind, including long-term care services, hospital services, personal care attendants, private duty nursing, and transportation services
  • Consumer assistance and advocacy for issues related to blindness such as housing and job discrimination, guide dog issues, or transportation problems

Most services are offered free of charge to all registered legally blind Massachusetts residents. Some services have additional eligibility requirements.

Contact Information:


Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH)

Description:

The Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH) is the state government agency that works on behalf of Massachusetts residents who are deaf or hard-of-hearing. The MCDHH serves as an advocate to make sure that deaf and hard-of-hearing residents have the same access to information, services, education, and other opportunities as the hearing population.

Services:

Some of the services that the MCDHH provides are:

  • Communication access, training, and technology services
  • Case management services, including specialized services for children
  • Interpreter and CART translation services
    Note: CART (Communication Access Realtime Translation) service translates spoken words into a visual print display that can be read on a computer monitor or other display device.
  • Independent Living Programs, including peer mentoring, assistive technology, consumer education, self-advocacy, and other independent living skills

Contact Information:


Massachusetts Department of Mental Health (DMH)

Description:

The Massachusetts Department of Mental Health is the state agency that oversees treatment programs, support services, regulations, and public policy for Massachusetts residents with mental illness. The DMH supports a community-based system of care.

The Department of Mental Health serves adults with long-term or serious mental illness, and children and adolescents with serious emotional disturbances. For adults, the mental disorder must be persistent and must interfere with the ability to carry out daily life activities. For children, the disorder must limit the child’s ability to function in family, school, or community activities.

Residents must file an application and get DMH approval before they can get services. Applications are available on the DMH web site at DMH Service Application Forms and Appeal Guidelines. Applicants can get short-term services while waiting for DMH approval for continuing care.

Services:

The DMH provides continuing care services to Massachusetts residents who cannot get needed services from other agencies or programs. DMH services include:

  • continuing care inpatient facilities
  • residential treatment centers
  • in-home treatment
  • outpatient services
  • skills training
  • supported employment
  • case management

Contact Information:


Massachusetts Department of Developmental Services (DDS)

Description:

The Massachusetts Department of Developmental Services (DDS) is the state agency that provides support services to Massachusetts residents with intellectual disabilities. The DDS works with many provider agencies throughout the state to offer services to adults and children and their caregivers. Individuals with intellectual disabilities and their families play an active role in making decisions about their lives and in choosing the support services they want and need.

The DDS has an application for services that must be completed before services can be approved. The application is available on the DDS web site: Application for DDS Eligibility

Services:

The DDS offers a wide range of support services for adults, including:

  • Service coordination
  • Housing options
  • Employment skills training and transportation to work
  • Non-work related skills training
  • Family support services, including respite care
  • Life skills training and support (food shopping, cooking, etc.)

DDS’s services for children include:

  • Service coordination
  • Family support services, including respite care
  • Partnership program for families of children with significant health care needs
  • Autism support centers
  • After-school and summer camp programs

Contact Information:


Disability Law Center (DLC)

Description:

The Disability Law Center (DLC) is a private non-profit law firm that gives free legal assistance to Massachusetts residents with disabilities who have been discriminated against because of their disability.

The Disability Law Center helps people with all types of disabilities, including physical, psychiatric, sensory, and cognitive. The DLC provides legal help with problems such as discrimination, abuse or neglect, or denial of services, when they are related to a person’s disability.

Services:

Services include information and referral, technical assistance, legal representation for individuals and groups, and advocacy. The Disability Law Center helps with disability-related legal problems in these areas:

  • Access to community services
  • Special education
  • Health care
  • Disability benefits
  • Rights and conditions in facilities

The DLC does not have the resources to help everyone who has a disability-related legal problem. The DLC sets priorities each year based on the needs of the community. See DLC Priorities. The DLC chooses cases that will have the most impact on the lives of people with disabilities.

Contact Information:

  • Disability Law Center (DLC)
    11 Beacon Street, Suite 925
    Boston, MA 02108Voice telephone: 617-723-8455 / 800-872-9992
    TTY: 617-227-9464 / 800-381-0577
    Web site: Disability Law Center


DisabilityInfo.org

Description:

The DisabilityInfo.org web site helps people with disabilities, their families, and service providers find disability-related resources in Massachusetts. DisabilityInfo.org has information on a wide variety of programs, agencies, and services for Massachusetts residents with disabilities.

DisabilityInfo.org is maintained by New England INDEX, a nonprofit technology group. New England INDEX collects information from over 100 members of the Massachusetts Network of Information Providers for People with Disabilities (MNIP) and puts the information on one web site, DisabilityInfo.org, for easy access.

Services:

On the DisabilityInfo.org web site, you can find:

  • disability programs, services, and agencies in Massachusetts
  • disability consultants, including advocates, educators, therapists, counselors, and other specialists
  • physicians and dentists with experience working with people with disabilities
  • local and regional offices for human service agencies
  • local disability agencies that you can call for help
  • fact sheets about many different types of disabilities
  • disability-related laws and regulations
  • disability news
  • information about assistive technology
  • other resources for people with disabilities

Contact Information: