Supporting Families

If family support were truly supportive, what would it look like?

What is Family Support?

What is Family Support?
by National Center for Family Support, Portland OR

Family supoport means different things to different families. Since the early 1980’s, an increasing number of states have begun to offer at least some services to families of people with disabilities. And now, more progressive states deliver a wide array of supports and services that are:

  • Family driven: Each family leads the decision-making process concerning the type and amount of support they receive;
  • Easy to use: Families are not overwhelmed by paperwork and red tape; and
  • Flexible: Families can choose supports and services based on their individual needs and preferences.

These family support programs make use of structures, services and supports, as well as informal or natural supports in the community. The idea is to provide whatever it takes for families of people with disabilities so that they can live as much like other families as possible. The supports that families receive need to be determined by the individual family based on their culture, values, preferences and specific needs at any given time.

Providing useful support can involve any number of types of services and/or support. These supports might be aimed not only at the person with a disability, but at other family members as well. Also, it is important to remember that it is not just what is offered to families, but how it is offered.

The main goals of family support are:

  • To keep families together until the person with a disability chooses to live independently;
  • To enhance a family’s ability to meet the many needs of their family member with a disability;
  • To improve the quality of supports to families while minimizing the need and the cost of out-of-home placement;
  • To allow the family to participate in integrated leisure, recreational, and social activities; and
  • To make a positive difference in the life of the person with a disability as well as the lives of all family members.

Quality family support programs should:

  • Focus on the entire family;
  • Change as the family’s needs, roles, and ages change;
  • Encourage familes to express their own needs and decide how their needs will be met;
  • Treat people with disabilities and their families with dignity by respecting their individual choices and preferences;
  • Respect cultural, economic, social, and spiritual differences;
  • Encourage families to use the natural community resources; and
  • Provide supports and servives that are easy to find and easy to use

Potential Family Supports

Centered Around the Person with Disabilities:

  • Diagnosis and assessment
  • Therapeutic services
  • Medical/dental services
  • Home health care
  • Recreational opportunities
  • Special clothing and diets
  • Transportation
  • Adaptive equipment
  • Housing adaptations
  • Adequate health insurance

Centered Around Family Members:

  • Information and referral
  • Service coordination
  • Temporary relief/respite
  • Family counseling
  • Parent/sibling education
  • Day of family member care
  • Financial assistance
  • Future financial planning
  • Mutual support groups
  • Housing modification

Supporting Families is a collaboration of:

  • Massachusetts Families Organizing for Change
  • The Arc of Massachusetts
  • Association of Developmental Disabilities Providers
  • Advocates for Autism of Massachusetts
  • Autism Speaks
  • Massachusetts Down Syndrome Congress
  • Massachusetts Developmental Disabilities Council

We need your story!

We need your help. We know that families across Massachusetts are struggling to meet the needs of their loved one with a disability. We know that many families do not receive enough financial support, and how this can create substantial financial and emotional hardship. We know this, but our legislators do not, which is why five statewide organizations have launched a campaign to substantially increase funding for families who are supporting individuals with disabilities in their homes.

There is a crisis facing many of the eighteen thousand families who support their loved ones at home. The families who face difficulty do not have adequate funding through the Department of Developmental Services (DDS). We can and will provide facts and figures that justify this expenditure, but the most powerful thing our legislators can hear are the life experiences of families like yours. Together, we can communicate the critical need to invest in families, and the incredible potential that will be unleashed when we do.

We are asking you to think about this question: “If family support were truly supportive, what would it look like?” It is important to capture what your life looks like now and what it could look like with more financial support from DDS. Some families have said they could get a job if they had more family support funding; some families say they could pay someone to take over during the night so they could get a full night’s sleep; other families have said they would buy adaptive equipment that would radically change the quality of their loved one’s life.

We need your story so that we can communicate the real challenges faced by real families, and the real impact that increasing family support can have on our families and our communities.

We will be using these stories to raise awareness in the general public and in our legislature. You can choose to have your identity remain anonymous or public, and we will fully respect your choices of how we may use this information.

Please send us your story by completing the attached survey of guiding questions, or email us your story. The survey is also online at Surveymonkey.

Comparta su Historia Familiar para Aumentar el Apoyo de la Familia [MS Word]

The Supporting Families web site.

Together we can make a difference!

 

 

In 2008, MFOFC led a campaign, You Are Invited, intended to bring insight and knowledge about the joys and challenges of raising our sons and daughters in our communities and how Family Support benefits us all. Every year individuals and families advocate tirelessly for increased funding. In 2016, MFOFC joined other statewide organizations to substantially increase funding for families who are supporting individuals with disabilities in their homes.

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