give me a break: respite relief for parents of children with special needs maintaining a healthy...
TRANSCRIPT
Give Me A Break:
Respite Relief for Parents of Children
With Special Needs Maintaining a Healthy Marriage While Caregiving
Presented by
Alabama Lifespan Respite Resource Network
Linda Lamberth and Java Bennett
Alabama Respite is a project of UCP Huntsville and Tennessee Valley, Inc.
Our Objectives Today
• Who Needs Respite? • What Is Respite?• When Do I Need Respite?• Where Can I Find Respite?• Why Do I Need Respite?• How Can Respite Promote a Healthy
Marriage?
What is respite?
Respite is a temporary break for caregivers of individuals with disabilities or chronic illness so that they may take time for themselves or spend time with family members or loved ones other than those they care for.
Who needs respite?
All families with children face stress and/or hardship that place them in need of respite at some time in their lives.
Respite services are most often requested and utilized by caregivers of children with physical or emotional disabilities or chronic conditions; or families at risk of abuse or neglect.
National Clearinghouse on Child Abuse and Neglect Information (2001) .IN FOCUS: The Risk and Prevention of Maltreatment of Children with Disabilities http://nccanch.acf.hhs.gov/pubs/prevenres/focus.cfm.
Who are the Caregivers?
Caregiver
A caregiver is the person primarily responsible for the day to day care of a loved one with a chronic illness or disability.
There are an estimated 400,000 caregivers in Alabama who are providing over 425 million hours of unpaid
care at at market value of over $4 billion.
59,000 grandparents in Alabama are providing full time care for a child under the age of 18.
Why Do I Need Respite?
Long-Term caregiving for a loved one can put a strain on any relationship. Often many lifestyle adjustments need to be made to provide long-term care.
There is no "typical" family. Each situation is unique, and each caregiver and the person they care for will
eventually create a system of care that works best for them.
Although caring at home for a child or adult with a disability or chronic illness can be rewarding, it can also be stressful –emotionally, physically, mentally and financially.
When Do I Need Respite?
Learn to Recognize Stress
What is stress?
Stress is a physical, chemical, or emotional factor that causes
tension in your body or mind. Most everyone has some type of
stress in their life. Stress is common because it is almost
impossible to escape.
s
•
Signs of Stress
• Denial
• Anger
• Social withdrawal
• Anxiety
• Depression
• Exhaustion
• Sleeplessness
• Irritability
• Lack of concentration
• Health problems
Asking for help is a sign of strength - not weakness.
It may not be easy at times to ask for and receive assistance.
This difficulty usually stems from several notions of thought:
• If I ask for help, will that be a burden on the person helping me?
• I don’t know about respite care.
• I know about respite, but don’t know where to find it.
• I don’t have money to pay for respite help.
• If I take respite, will I be considered a ‘bad’ caregiver?
ARCH National Respite Network www.chtop.org/ARCH
How does respite help promote a healthy marriage?
KEEPING YOUR MARRIAGE HEALTHY WHILE CAREGIVING
A healthy caregiving relationship centers on:
• Open communication
• Learning the facts about how life will be with your loved one with special needs
• Willingness to adjust your views in many areas
• Paying attention to the health of both the individual with disabilities as well as the caregiver
• Recognizing stress
• Spending time away from caregiving to be with each other
As a caregivers, you and your partner will likely
face many unique challenges
1. Worry and concern for the condition of your loved one
2. Stress over juggling work and finances
3. Getting your home accessible for caregiving
4. Keeping your marriage healthy while caregiving
Managing Self-Health
Learn how to take care of your loved one, but
Learn how to take care of yourself.
Your health is essential to your wellness and ability to adequately care for your loved one. You cannot expect to effectively care for your loved one when you are in distress.
Adopt a Healthy Lifestyle
• Get enough sleep
• Eat regular, healthy meals and snacks
• Participate in regular physical activities because your body can fight stress better when it is fit
• Get help -find time for yourself.
Partner or Spouse Caregiving
Couples should keep the partner/spouse role separate from the caregiver role.
1. Have a routine
2. Have a specific area or room devoted to intimacy
Maintain Equality –
Couples should contribute to every day issues like parenting, chores and money management.
Equality helps a caregiver to NOT become overwhelmed or resentful.
How Does Respite Help?
“Respite can help to save a struggling marriage or a stressed out family at their wits end. It provides the much needed (and much deserved) break that any caregiver needs to help take care of themselves, and ultimately, their loved ones.”
ThnkPos http://citizensbriefingbook.change.gov/ideas/viewIdea.apexp?id=087800000004qDH
Respite has been shown to improve family functioning and life satisfaction, enhance capacity to cope with stress, and improve attitudes toward the family member with a disability (Cohen and Warren, 1985)
Respite provides caregivers of children with a disability a break from the stresses of parenting.
Parent stress can be a significant precipitating factor in child maltreatment.
National Clearinghouse on Child Abuse and Neglect Information (2001).IN FOCUS: The Risk and Prevention of Maltreatment of Children with Disabilities. http://nccanch.acf.hhs.gov/pubs/prevenres/focus.cfm.
Without adequate family support…
children with disabilities are nearly 4 times more likely to
be neglected, physically or
emotionally abused.
(Sullivan & Knutson, 2000).
Statistics on the divorce rate of couples who have children with disabilities is somewhat higher than in families with typically developing children. Approximately 50 percent for first marriages a close to 75 percent for second marriages.
Married with Special-Needs Children A Couples’ Guide to Keeping Connected By Laura Marshak and Fran Pollock Prezant ~ 2007
Where is respite?
Respite is the service most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance.
Caregivers are often overlooked in the provision of comprehensive abuse and neglect prevention and family support services, despite the fact
that an estimated 25% of the U.S. population are caregivers.
U.S. Census, 2000
Disabilities in Alabama
The 2000 U.S. Census reports there are 942,000 Alabamians with a disability.
45,509 are 5-15 years old
625,152 are 16-64
275,044 are 65 +
Respite in Alabama
• Medicaid Waivers • Alabama Cares • Faith Based Respite Programs• Adult Day Care• Voucher respite for those caring for loved ones
with mental retardation, cognitive delay or developmental disability.
Medicaid Waivers
• Must meet the Nursing Facility Level of Care
• No age requirement
• Financial Eligibility
– Individuals receiving SSI
– income is not greater than 300% of the SSI Federal Benefit Rate
• Waiver Size/Slots Available 9,205
• Operating Agencies
– Alabama Department of Public Health (ADPH)
– Alabama Department of Senior Services (ADSS)
Elderly and Disabled Waiver
MRDD Waiver
Mental Retardation/Developmental Disability Waiver
• Diagnosis of Mental Retardation (MR)
• Age Requirement: 3 years and older
• Financial Eligibility
– Individuals receiving SSI
– Income not greater than 300% of the SSI Federal Benefit Rate
• Waiver Size/Slots Available 5,260
• Operating Agency - Alabama Department of Mental Health and Mental Retardation (ADMH/MR)
Living at Home Waiver
Diagnosis of Mental Retardation (MR)
• Age Requirement - Persons 3 years of age and older
• Persons not residing in a group home setting or environment
• Persons currently on the waiting list for MR services
• Financial Eligibility – SSI recipients
– Individuals receiving State Supplementation
– SSI related protected groups deemed to be eligible for SSI / Medicaid
– Low Income Families with Children
• Waiver Size/Slots Available 569
• Operating Agency – Alabama Department of Mental Health and Mental Retardation (ADMH/MR)
Alabama Cares·
• Age Requirement - Caregivers of any age who provide care to individuals age 60+
Caregivers age 60+ caring for children age 18 or younger.
• Care-recipients with greatest social and/or economic need.
• Older caregivers providing care to children with MR/DD & Caregivers who are providing care to older persons with MR/DD
• A sliding fee scale is used to determine the client’s shared cost for certain services Services
• Operating Agency
- Department of Senior Services, Area Agency on Aging
Voucher Respite
Voucher respite is funding paid directly to you, the caregiver, so that you can hire whomever you wish, at whatever time you wish.
You may use the funds allotted to you all at once, or in little bits over the approved quarter.
HEARTS
United Cerebral Palsy of Alabama (UCP), through the Department of Child Abuse Prevention -Children’s Trust Fund of Alabama for those who are caring for a child, up to age 19 with a developmental disability or at risk of abuse and neglect.
Department of Mental Health
Alabama Respite has funding through the Department of Mental Health for caregivers of children and adults who have cognitive delay or mental retardation.
Both of these sources of funding respite allow you to choose your own respite provider.
Respite provider must be over the age of 18 and does not live in your home.
What About Alabama Respite?
• Alabama Respite is a statewide network of resources and referrals for respite.
• We try to answer the who, what, when where, why and how questions about respite.
• We can refer you to an appropriate source for respite.
• We can help you start a respite program in your church.
• In some cases we can help you pay for respite.
How Can I Help?
Encourage your Family Resource Center, fatherhood program or healthy marriage program to work with Alabama Respite to provide some needed funding for
you to take a break.
• Educate state and federal legislators about the benefits and need for respite.
• Call or email your legislators and let them know you are a caregiver and you need respite.
If you don’t know who your legislators are, Alabama Respite can help you
• Caregiving takes hard work and devotion. Providing care for a loved one is an expression of affection and commitment.
• You can expect to experience ups and downs. You may feel overwhelmed, stressed or unappreciated
• However, it is equally important that you make a commitment to take care of yourself because that is important for you and the person you care for as well.
Contact Alabama Respite
Alabama Lifespan Respite Resource Network1521 E 9th Street, Anniston, Alabama 36207
256 533 4167866 737 8252 toll free
• Web site: www.alabamarespite.org• Email: [email protected]
• A Statewide Project of United Cerebral Palsy of Huntsville and
Tennessee Valley, Inc.
