About Families:
What They Need & Advocacy

Every family’s needs are unique, and that should always be considered.

There is no doubt that families of individuals with dual diagnosis have complex needs that are often ignored.

We can be talking about all kinds of families including grandparents raising children with Dual Diagnosis, two parent families, single parent families, foster families, siblings caring for an individual, therapeutic homes, and so on.

Challenges and Needs

Let’s talk about some of the most common and most difficult needs to meet. Recognizing the challenge is the first step toward finding solutions.

Some families have significant financial expenses from day one, especially if their child was a preemie or was hospitalized with congenital medical problems.

Individuals with Intellectual or Developmental Disability can tend to have more hospital and medical care.

Some families have had to move to find services for their child. This can involve job changes, leaving the support of extended family, friends, and so on. Some parts of the state do not have all the services that are needed.

Some families feel very alone and isolated. They may not know anyone else who has similar challenges. They may feel judged or misunderstood in their community.

It is normal to have all kinds of difficult emotions when a child is diagnosed and as families learn about and encounter challenges.
Feeling blamed by professionals and community members. There can be a stigma related to both Intellectual or Developmental Disability and Mental Illness.

Dealing with multiple agencies and service providers

Respite care and support is inconsistently available. This is a problem that can be directly tied to the ups and downs of funding of agencies.

Functions of Families

We’ve talked a lot about all the clinicians we need to help our family member with DD. The functions of the family or others caring for the individual at home may be even more important.

Jo Anne Nugent, ED D, author of a handbook on Dual Diagnosis says it well:

In the past, there has been an unfortunate tendency to assume that the most important element of treatment is the expertise of the medical professional, such as the psychiatrist. In fact, in many situations, support people felt paralyzed until they could access this clinical expertise. Certainly the clinical professional plays a key role in diagnosis and treatment of a person with a dual diagnosis.

However, people who support the individual on a day to day basis have just as crucial a role to play:
Listening sensitively to all types of communications, verbal and nonverbal
Teaching skills that enhance the person’s quality of life
Observing changes in physical health (and mental health and behavior)

Dr. Nugent’s list continued

Providing habilitation environments
Ensuring that proper care is accessed with respect to medical needs
Monitoring treatments such as medications and behavioral programs
Helping people to develop and maintain social supports
Participating in planning
Contributing accurate and thorough information to the treatment team”

That is a lot, it is important, and it needs to be consistent!

Interesting Data

  • US data shows that 80 – 85% of children and adults with developmental disabilities will live with their families until their parents’ health declines or they die.
  • 77% of adults with developmental disabilities are presently living with parents who are 60 or over
  • There is an increasing trend in the proportion of individuals in the US with intellectual disabilities and developmental disabilities living with family members. In 1992, 6.3%
    of Medicaid recipients with developmental disabilities were living at home. In 1999, 22% were living at home. In 2006, 38.8% were living in a home with family members (most often parents).
  • Caregivers (mostly mothers) spend 50 – 60 hours per week on caring for their child or adult with a disability
  • The prevalence of challenging behaviors among children and adults with developmental disabilities leads to increased stress in family caregivers. It also places the child or adult at greater risk of abuse, neglect and deprivation.

This data shows that families are the main support for many people with intellectual or developmental disability. This also shows that more needs to be done to support the Individual with IDD and the families, friends and caregivers that support those individuals throughout their lives.

Good News! Individuals who live with families are happier!

What Families Need

Let’s talk about some of the most important needs of families.

They need to be able to care for their own health, both physical and mental health.

They need access to support groups. These can take many forms. Remember that there is support for you. There are organizations that provide many educational resources.

They need access to respite care gives parents a chance to have a break.

They need access to day programs can give both children and adults with IDD and their parents a break and enhance their lives in many ways.

They need access to after school programs may be available in some areas.

They need choices—Families need to be able to choose programs that are meaningful and suitable for their needs.

Families need programs that are available and accessible close to home.
Going hand in hand with having the programs available is providing families with knowledge about what is available.

Family-Driven Systems of Care Approach

Child and Family needs drive services. The children’s mental health system in Utah subscribes to a Systems of Care Approach which should also apply to the treatment of children and youth with dual diagnosis.

The Systems of Care (SOC) approach must be family-driven with the needs of the child and family driving the types and mix of services provided.

Families and individuals participate in:

  • Choosing supports, services, providers
  • Setting goals
  • Designing and implementing programs
  • Monitoring outcomes

Standards for Family Involvement

Standard 1: Families define themselves and their own culture. Families have their own individual strengths and know best what would work for them.

Standard 2: Families require culturally competent services and supports that reflect their race, ethnicity, gender orientation, language, socio-economic background and family structure.

Standard 3: Families have their basic needs met. All persons deserve to have their needs met.

Standard 4: Families have access to information and training. This is vital in the growth of families and their ability to be empowered to take care of their own.

Standard 5: Family-identified priorities and concerns drive policy and practice. Families take an active role in advocating for family-friendly policies.

Standard 6: Families share the power to make decisions and responsibility for outcomes. When families partner with professionals and service providers as equal partners, they have a vested interest in policies, services, responsibilities and outcomes.

Standard 7: Families and their system partners know individual strengths, limitations and fears. Family-Professional partnerships do not happen overnight. Both sides are responsible for teaching and receiving information and forming strong partnerships.

Standard 8: Families have their own independent organization to speak with a collective voice for system change.

Standard 9: Families and their organizations get both respect and protection for their system partners.

We are all in this together. By building strong parent professional partnerships, we will have a bright future.

Finding Support and Resources

Parents can plan ahead. Family members can take actions so they receive the support they need.

Ask questions. In any situation you are in, be sure to ask questions. Know what your options are. Understand everything you can about your child’s conditions, needs, treatments, and what is available.

Remember, there are a number of parent and consumer run organizations that have a mission to educate and support parents and families. All of these organizations have a track record in Utah of being there for parents. These have been mentioned before in this training. You can call someone for support, download helpful information and much more.

Attend Community Events
Family Links events
Conferences
Resource fairs
Utah Parent Center events tab

Join a parent support group
Local Family to Family Network group
Disability specific groups
What will work for you?

Find online support
Online support groups
National groups and resources

Let others know what you need. This can be difficult at times, as there are moments when family members feel like there is not one more person who can be a support. Reaching out to others in the community may be the next best step.

Family
Neighbors
Church groups
Community groups
Service Providers

Apply for services from Division of Services for People with Disabilities (DSPD). There are people who can answer questions about this process at the Utah Parent Center.

Advocacy

When we are not finding the services that are needed,
we can see it as an opportunity for advocacy.

Advocacy is speaking up

You are advocating when you tell those around you what you need. We all advocate for our individual children/family members on a day to day basis.

You may want to take it a step further and join with other parents and stakeholders to advocate for systems change. Many of the services now available are there because others before you took the time and effort to speak up or to help educate policy makers.

Some of the individuals who worked on this training are long time advocates who have seen many changes and improvements over the years.

In summary, The concept of Advocacy is simple:

4 Basic Steps
Choose your issue
Ask, “What can I do?”
Ask “Who do I talk to?”
Communicate your views and follow up!

Where?

In your child’s school or program
With agencies, services, cities, counties
Advisory councils
Hearings, committees, etc.
Legislative

The Legislative Coalition for People with Disabilities, Utah Developmental Disabilities Council, League of Women Voters, PTA, the political party of your choice, and other organizations provide great training and support on how to advocate.

Be warned – It can be fun and addictive. You can spend as little or as much time as works for you on advocacy.

Here are a few main points to remember:

  • Be respectful. Assume that the individual wants to be helpful.
  • Make sure your body language is appropriate and professional
  • If there is time for a discussion, ask the policy maker about his or her position on the issue
  • Really listen to what the policy maker is thinking. This will give you information about what education might be needed or if the individual is a champion for your cause.
  • You need to communicate respect as you listen.
  • Be prepared and organized. Don’t get sidetracked with chit chat, but make sure you make your points in the limited time you have with this policymaker. It is important to be friendly, but be businesslike too.
  • Be positive. Assume good will. You may need to describe the problems, but be sure to have some positive ideas for what can be done to solve the problem
  • Thank the policymaker. Be appreciative of the time that is spent with you and of the willingness to listen. You can use the thank you as a summary as an excuse for the points you have made.
  • Usually you should also send a written thank you.
  • Follow up. If you have made any promises to provide information, be sure to do that. Also you can often ask the policymaker’s staff what kind of follow-up is appropriate. Complete any tasks that you have agreed upon.
  • Be trustworthy. Make sure the information you provide is accurate and can be backed up.

Looking to the Future:
Our Wish For You

These are our hopes for the outcomes of this training.

You find the correct diagnosis for your family member
You achieve a treatment plan and services for your family member
Your family finds the needed supports and services
You feel empowered to take the next steps

Think about writing down one thing you are going to do as a result of what you have thought about or learned about while going through each of the four sections. Creating a plan on how you can accomplish that one step can be a new beginning!

We at the Utah Parent Center wish you the best as you work to help your family member with disabilities create the life he or she dreams of. Be sure to access our website at utahparentcenter.org to see our extensive resources and training related to transition from high school to adult life. If you have concerns or questions, please give us a call and speak with one of our knowledgeable parent consultants.

230 West 200 South, Suite 1101 Salt Lake City, UT 84101
Phone: 801.272.1051
Toll-Free in Utah: 1.800.468.1160
Email: info@utahparentcenter.org

This Training is Provided by:
Allies with Families & Utah Parent Center

With Funding From:
The Transformation Transfer Initiative